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Thursday

Tragedy, despair and hanging on

Tragedy has happened here.  I don't even know what to say about it.
(But haha to all those weepy tragedy is me age of autism twits... this ain't about autism)

After much expense and battling, my adorable nephew has been dragged out of our home to his.
Not because a judge ordered it.
Not because a judge heard our evidence.
But rather because court ran out of time and could not hear us.
Because a certain 'psychologist' (with no registered PHD) has decided taht he just doesn;t care what happened to the little one when he was in his father's care last year. 

We are grieving.  We are terrified for the little one.  We are hurting for us all.

So many court battles, so many hurtful divides in the family.  It was a fight we carefully considered before engaging-it was not hard to figure out that there would be much hurt and anger from all sorts of people.

But for myself, and my husband, we simply did not feel we had much choice.  The 'caregivers' were not making choices that were beneficial to the child.  They were, in our oh so biased opinions, behaving bat shit crazy (to borrow a kimphrase)

This little guy has lived in my home since March (feb28/march1).  He has sensory perception issues that vanished as he came to understand that he was safe and loved.  He rocked constantly and yet now is only rocking when agitated.  He still has SIBS, which is so horribly distressing. 

We have paid for assessments.  We have paid for therapies.  We have watched this child go from being emotionally distraught and unhealthy to confident and strong.

To have them refuse to stay in touch with the little guy (who is not quite two).  To have them take him without a care for how such a change will be perceived by the little one.

So sad.  So unfair.  So much for my positive belief in our justice system. 

Wednesday

Just another day as a parent

Life has been so busy!
Today, though, was busier than most. 

My two 'teens' are in middle school.  Which means a 1/2 hour bus ride to the nearest city, for the first time in their school experience.
I should add that it is currently -20ish celcius.

I don't know what everyone elses' children are like, but mine like to sneak out innapropriately dressed. (big sister is too cool to dress warmly and NSLM takes a month to change gears when it comes to outdoor gear).
Not that their lack of winter jackets has anything to do with this post-I was just sayin..

Anyways, I work full time these days (hating it) but NSLM had a speech/BI appt after school so I left early, ran to pick up the baby, then made the trip into town to pick up the kids to take NSLM to his appt and hang out with Big Sister.
This is a weekly routine.  Without fail.

Except, when I get to the school, Big Sister is not there.  The ladies in the office tell me that the THINK she was in class today. 
Staying somewhat calm, I explain, in small words, that THINK is not acceptable.  I want to know for sure, you see.  I also request that they find out if she got on the bus.
The lovely ladies try to page the teacher and hand me the phone.  The lady on the other end tells me that Big Sister is NOT on the bus.
Not so calmly I explain that she might want to be very sure, as my next  call is going to be to the RCMP and if she is on teh bus they will get to explain to the media and teh police WHY they didn't know it.
She double checks.
Yup! She is on the bus!

I quickly make arangements for my ex husband to pick her up, as she doesnt have her housekey (and it is frackin cold!).

NSLM turns to me, as we go to the car, and he grins.
"Interesting how you worry more about me, but it is Big Sister that isn't where she is supposed to be"
I laughed, agreed and on our drive to the therapists it really sunk in.

He is right.
I DO worry more about him.
Yet...
He is so very reliable.  He does not ever break the rules.  He is always where he is supposed to be.  He makes the best choices he can ( considering his inability to understand abstracts until explained).
How about that?

Hugs and Laughter,

Tuesday

Where the heck is that magic wand... Rambling about early interventions

I have Google alerts for autism in the news which led me to THIS article.

Reading  it made me take another glance at the first five years of NSLM's life.

Is what Big Sister did on a day to day basis early intervention?  She forced him to interact with her by simply refusing to be ignored.  She stuck suckies in his mouth, gave him toys to hold, babbled at him constantly.
She would pet him, cuddle him, kiss him and pinch him (Not that we allowed the latter!)

They are one year, one week and 4 days apart in age.  She is outgoing, pushy and demanding.  He is laid back, quiet and as far from aggressive as one human can be.  He didn't have a chance.  In fact, it was not until a copule of years ago that he began to tell her no.  Until then he was her agreeable play partner, easy to boss around and most certainly did not interject with his own desires or opinions!

It used to drive me crazy, but looking back, I wonder.  Did that level of contact that he had with Big Sister help?  Was having a sibling so close in age more of a blessing than I realized?

Was Big Sister the magic wand that accidentally taught him the social basics?

hnmmm... Maybe I can rent her out?

Hugs and Laughter

 

The Not So Little Man and the Musical Adventure

NSLM has been taking guitar lessons for a couple of years now, which is in itself startling if you had been around when he was under 8.  In those days the slightest and quietest of musical sounds were met with screaming, fit throwing and general meltdowns.  I exaggerate, a bit, but I do remember that Little Man did truly detest music.  He outright refused to have anything to do with the kindergarten singing and dancing.

Now, we have a new music teacher here in rural town.  A wonderful teacher, a bit eccentric, who plays a multitude of instruments (and has these instruments in his music studio) as well as recording equipment.
Big Sister looovveess to sing and as such has been a protege of this teacher.  She goes for an hour or so each week, while NSLM seems to enjoy 1/2 hour per week.

As focused as we all were on Big Sisters singing ability and recordings, we were completely unprepared for what happened with the instructor began to quiz the NSLM about his musical interests.

Turns out that NSLM wanted to learn to play the drums.  So with me sitting there watching, the instructor decided to 'teach' NSLM some drumming technique.
Turns out that NSLM has an interesting ability.

I had the pleasure of watching a seasoned music teacher get excited about a student.  (If Mr. Teacher's frantic darting glances at me with his eyes as wide as pie plates was an indication of his excitement, lol).
He had NSLM take the sticks and copy a single beat on the wide cymbal.  NSLM did this.  Stopped.  Looked thoughtful, then did it again, but this time with a stutter (two taps per stick at a time). 
He held the rythm perfectly.
While I was a bit surprised at how comfy he was with the drumsticks, I was not startled by his ability to keep a beat. 
The teacher showed him how to sit at the drum kit, then started orally giving instructions.  It took about 5 minutes to have NSLM playing with both foot pedals, the high hat and the smaller drum.  He was able to move all four limbs to order, hold the beat indefinately.
I thought the instructor was going to come unglued.

So good right?
Except... My house is 900 sq feet with two adults, two teens and a toddler living in it.  I do not have a garage.
The instructor has a 'low end drum kit' he will let us use, but I would need to get the high hat, food pedal and chair to go with. 
AND
A place to put these things.

On my under 30,000/annum income, how the heck am I going to do this?

Next monday I am going to photograph him playing.  It is a must see.

Monday

Autism does not equal silence

I know I haven't been very loud lately (if ever I was really 'loud' lol), but this whole silence for autism thing has really irked me.
I have a wonderful ASD child, whom is 12.45 years old.  He is well able to speak although he falters if you want to talk about feelings, relationships etc.
He loves the internet, started a blog and quickly decided to create his own website and online record of 'things'.
How is ignoring social networks helping him?
How does being silent online give me an inkling of what it is like to be my son?

I think it takes away from the hard work autistic persons do to live in a world of NT's.  In my jaded opinion, shutting down our social networks for a day is a slap to all those who rely on these sites for the majority of their socializing.  What a slap to the autistics, like my son, who use the internet to share thoughts, reach out to others and gather information on all sorts of topics, including social interaction.
Yes, let us show our support by refusing to use the internet to socialize.
Sigh..

I am also confused about silence raising awareness of anything.  Part of the fear people have of autism is that for too long people who have a loved one with autism were being quiet.  So many adults over the age of 30 are in denial of what ASD represents because they did not grow up knowing about autism, or knowing a person whom was autistic.

Thanks in large to the internet information is being shared far and wide, (not always accurate information sadly).

Being silent is not going to teach me anything about autism or give me insights into my son's mind.
Asking questions, sharing information and being upfront and honest will get me much farther.

Anyways, just the opinion of a mom!

Friday

Small bits of humour, IEP

We had Not So Little Man's IEP meeting yesterday.  Because he is in middle school this year they insist that he attend so that he can learn to advocate for himself.
Interestingly enough, he also got this lecture from the doctor this summer.  Advocate for yourself, learn about autism, learn about your learning disabilities...


He did not want to.  He has no interest.  I am the Mom and he trusts me to make sure that his school  is safe for him.  But I insisted and yeseterday there we were.
Myself, my lovely son, my nephew, cuz the dang hubby forgot and did not show up to take the little monkey, Teacher, Vice Principal and LA Assistant.  Thank fully I invited Not So Little Man's Language Pathologist/behaviour analyst with us.

20 minute slot.  They had a flipchart that for the twenty minutes they went through.  We were not given an opportunity to say very much.


Mrs T (our speech/behaviour lady) finally, 15 minutes in, asked how long they had known Not So Little Man.
The Child in question answered, "5 weeks, but really that is 4 days a week minus one holiday and one pro-D day so that is 18, but only for six hours each day, so that is 108 hours and that makes 4 and one half days. That is not accurate as some of these people have never met me"

I thanked tehm for the chart, I did actually learn a few things (He reads at 175 words per minute with 22 errors?? ).  I insisted that another meeting be booked where myself and Mrs T could outline what WE knew was going to be needed to assist Not So Little Man this year.

Bless his 'sweet self' he looked at me and says "Did I suffer through this one only to have another one?"


Hugs and Laughter

Monday

I miss the quirks

I miss little man's childhood.

Little man is not so little anymore.  At 12 years of age it is obvious he won't hit 6', but he is already as tall as I am. 

If you are not looking closely as he walks towards you you would never know that 5 years ago he walked on his toes.
I miss the toe walking. Now he has a slight hunch when he walks, but that fits right in with the slouching so many of the preteens are doing.

Not so little man has worked hard on learning his "IBNice's" (this is what he calls social skills, lol).  He now makes fleeting eye contance with cashiers and says thanks-without any comments about their appearance.  I miss the holy hannah honest comments he'd blurt out, I miss the recitations of his favourite bits of information.  I miss that naive little man that was so very honest.

Watching him with his peers, tapping his pencil against his leg I am grateful that he has less awkward stims.  Yet, my heart hurts a little, remembering his toe rocking and circle pacing.  His pet phrases that he would mutter-oblivious to the strange looks his muttering gathered from those about him. 

Not So Little Man has been getting on the bus just fine, heading to the new school via the 35 minute bus ride wihtout a hitch.  Although his new school found it neccessary to switch his classroom FIVE times ont he first day of school, the last switch taking him out of the only classroom where he had a buddy, Not So Little Man handled it all beautifully-saving his meltdown for home (and it was barely a meltdown).  I feel bereft, uneeded and a bit lost.  I miss him needing me. 

Selfish thoughts, I know.  Please do not think that I am not bursting at the seams with pride-I am thrilled that he is doing so well.  A little surprised, but absolutely giddy.  It is just that there is that little piece of my heart that is sad to see his childhood vanish into young adulthood.  Sad that my role is not as integral as it once was, teary that so much time has gone by.

I am set adrift too.  My routines over the last 12 years changed drastically over the last six months.  My two youngest are becoming so very independant.  My nephew coming to stay with us.  New disabilities to deal with (nephew has a range of issues-none of which are autism) that I personally have found to be more trying than autism was for us.

I am working full time, the kiddies are gone from 8 until 430 (rural).  Things have changed.
On top of all that change is watching my youngest, this Not So Little Man grow into himself with a confidence I had not expected from him. 

Hugs, Teary Laughter and Sunshine Thoughts,
Angela

Friday

Mommy Thoughts

Being a mommy is such hard work sometimes but wow... It is a treasure too, isn't it?

It amazes me, as I sit here with one child 'all grown up' at 21 years old and my youngest being 12-plus having my nephew living with me since February, that each child has so much to offer.

Mr.AllGrownUp is a gentle rebel. 

He, really, is the child that taught me to respect non conformance.  He has never had that timid obedience to authority. He is the child that always questioned, demanded that one earned his respect before he gave it and had no problem with breaking the rules when he felt it was necessary. He felt it necessary in Kindergarten when he 'got in a fight' with another child.  He told me and the principal that he did indeed understand that fighting is wrong but "That kid was pushing a girl off the play fort!"
He felt it was 'worth the consequences' in grade eleven when he got in between two girls that were fighting (one ended up in the hospital) and was suspended.  (Zero tolerance policy). 

He is also the child that taught me that not all boys think hitting is fun.  He is the boy that walked away.  That would protect himself, but chose to not hit back.

He taught me that parenting is a valuable skill.  That i had to hone that skill, be flexible enough to learn new things fast but rigid enough to maintain some sort of order.  He taught me, with his sticky hand in mine, that there was nothing more valuable that i could be doing.  That being a mother was the most important thing I would ever do.

Ms Princess is fast becoming 'allgrowedup'.  Being the only daughter, she and I have had some spectacular clashes yet I admire her beyond words.

She is the child that taught me just how important self acceptance and confidence is.  She taught me to have patience for my own weaknesses, to not judge myself so harshly.  She is very confident, close to being 'cocky'.  She excels at everything she puts her hand to.  She can draw, paint, play guitar, sing and write with skill and talent.  She is the junior captain of the Wrestling team, performs in front of her peers without issue, plays sports and is an honour roll student.

Ms Princess is the child that taught me to see the world around me as beautiful, exciting and educational.  From the time she could crawl she demonstrated how a drawer was actually a play area, rich with sound, texture and exploration possibilities.  That flour was a medium for art, an ingredient for play, integral to science (inside joke, she dumped a huge pail of flour on little man's head).  She was constantly 'getting into trouble'-destroying things, colouring on walls, emptying ketchup onto the flour-you name it.  She just HAD to KNOW! To know what it felt like, looked like, tasted like and of course what it looked like on her younger brother's head.

 She taught me that people go through phases.  Princess has been the teacher's pet and the teachers arch nemesis.  She has been the 'popular' child in class and the wall flower.  She has been raucous and loud and ultra calm and quiet.  She has been the burly and been the champion of the bullied.  (I wonder if that is all part of her exploratory nature? )

My daughter, she taught me that I can be spitting mad and filled with love and tenderness all at the same time.  That I can watch a physical sport like wrestling and have the urge to jump on the mat and help.  She taught me be artistic, to create and be proud of my accomplishments.

Little Man is our child on the ASD spectrum. 

He is the child that taught me that every dang child is completely unique.  That experience can be a detriment when we use it to make assumptions.  As the oldest of four children and having run daycare for ten years I went into my pregnancy with Little Man with confidence.  From the moment of the first ultrasound he has been teaching me to leave room for differences, to not be rigid with over confidence.

He is the child that taught me to fight when I feel it is needed.  That passive does not cut it.  He taught me to stand up for what is right regardless of who disagreed (the whole dang family told me I was wrong, that I should not worry about him.)

He is the child that taught me that there is great joy in being an advocate.  That labels are just words-needed to services but change nothing.  He taught me that the things we fear are only scary if we refuse to learn about them.

Little Man taught me to be humble.  His genuine honesty humbles me.  His amazing ability humbles me.  His sweet smile and quirky humor.

Little Man taught me that nothing is impossible. 

I can't imagine my life being without my children-any of them.  Their diverse personalities and their love of life has been the greatest gift I have ever received. 

Hugs and laughter

Wednesday

Mothers who kill their children.... It is not about autism.

Disclaimer: Yes, I am opinionated.  Deal with it.

Age of Ridiculous have a new post up concerning another child who was murdered by their parent.

"Four children with autism under the age of 21 have been murdered by their parents in a single summer. Two in Dallas, TX, one in The Bronx, NY, and now Christopher Melton of Howard County, Maryland. What more can I add? KS"
The above quote is a beautiful example of how those AoA folks want everything negative to be about autism.  Four children in North America, over three months, have been murdered this summer (allegedly) by their parents.  AoA's KimS is certainly happy to demand the nation to see this as a national crisis.  The general consensus among the loons over there is that these poor parents did not have enough support (what parent does?).  That if only there were more supports in place for parents of autistic children then this would not happen!

The statistics do not work with this hew and outcry, however.  According to this and the American Anthropological Association  200 American Mommies kill their children every damn year.  Heck, in 1983 600 American children will murdered by their parents [Kaye, Neil; Neal M. Borenstein and Susan Donnelly (1990). "Families, murder, and insanity: a psychiatric review of paternal neonaticide". Journal of Forensic Sciences 35: 134.]

Why is it we are only hearing (or mostly hearing only) about autistic children being murdered?

Because it is more titilating to read.  Partly because as parents of autistic children (or persons whom are autistic) we also have the word 'autism' flagged in google news. 

Use your head KimS of AoA.  It ain't about autism.  It is about mental health of the parents.  It is about evil.  But it sure as hell is not the child's fault, nor the government's fault.

Not saying, either, that I don't believe that ALL parents need more help than what is readily available.  I am sure that we all have had moments when some respite care would have been more than welcome.

But as adults who are responsible for our children it is OUR job to be aware of our own mental health.  It is our job to reach out for help when we need it.  To make sure that we are looking after our selves in order to be the best damn parent we can be.

Shame on Age of Assholes for implying (and at times outright saying) that the autistic child causes their parent to murder them.  For saying that raising an autistic child is so bloody damn difficult that murder/suicide is a serious consideration.

For Shame...

Monday

New Rethinking Autism Video

Click Here to see the new video from www.rethinkingautism.com

Gee, guess Age of Idiots was wrong again!  There ARE adults with Autism!!

Thursday

Every Child has the Right TO be LOVED-special needs included.

Children have rights.  There are 54 articles (I'm only posting two for examples) listed in the 'summary of the rights under the convention on the Rights of the Child'.  These are WORLD rights.
Those rights superseed their parent's rights to 'freedom of speech' and all other rights to enjoy themselves.  Those rights apply regardless of location, race, disablity, religion and so forth.
Article 2 (Non-discrimination): The Convention applies to all children, whatever their race, religion or abilities; whatever they think or say, whatever type of family they come from. It doesn’t matter where children live, what language they speak, what their parents do, whether they are boys or girls, what their culture is, whether they have a disability or whether they are rich or poor. No child should be treated unfairly on any basis.
A child's best interests must be considered as teh PRIMARY concern when making descisions that affect them.
Article 3 (Best interests of the child): The best interests of children must be the primary concern in making decisions that may affect them. All adults should do what is best for children. When adults make decisions, they should think about how their decisions will affect children. This particularly applies to budget, policy and law makers
Children have the right to live without abuse.  The right to be safe and cared for.
According the the Justice Centre in Canada emotional abuse is "harming a child's sense of self"
I wonder if letting a child know that you think they would be better off dead is considered abuse? (sarcasm).

Now that we know what rights children have, and what constitutes abuse let us look at all these parents that moan and groan about raising their autistic child, those parents that condone murdering a child because that child is autistic... For those parents I have a message.


To all the mommy's (and daddy's) out there that are struggling to raise an autistic child, living the horror that is autism, desperate, would rather their child have cancer, vaccine injured, living a tragedy, overwhelmed or whatever other excuse you feel you may have to harm your child:

Call Child protective services.  Give your child to the Ministry of Children.  Heck! you can advertise on Craigslist. (This is not a serious suggestion-do not sell your child.)

There are millions of people out there that will take your c hild. They will love your child.  Provide your child with everything he/she needs to meet their potential in a home where they are accepted and loved, encouraged and supported.

You really think someone else can't love your child? That your child is too much, too sick, to injured for me to be able to compare my child to?

FUCK YOU.
Each and every last one of you that compares your child to AIDS, the Houlocaust, Cancer should hang your head in SHAME.

If you truly, really feel that your child is so damaged, so sick, so unworthy of being loved the way they are you should hand that child over to the applicable government agency that WILL find a family that will NOT feel that way. 

It is every child's right to be loved and accepted, supported and nurtured.  I don't care if your child has every disability known to mankind-you still do not have the right to choose to abuse or murder your child.

Is it hard to parent a child with special needs? Yup, you bet.  Do parents sometimes feel overwhelmed? Of course!  Does that justify harming your child? Absolutely not. 

Dealing with the pain and frustration that comes with parenting is part of being an adult.  And loving parents that know they are not coping get help.  Real adults let someone else care for their child if they cannot.  Period.

Tuesday

JRC house of perversity

The text below in black font is taken from www.judgerc.org/history.html



The words are quite complex, so I have translated it into simple phrasing in red font.



A thoroughgoing behavioral approach differs markedly from these traditional approaches in certain ways. Some of these differences, which are itemized below, have caused JRC to experience difficulties with licensing agencies from time to time.

Our approach is unethical, unproven and torturous. Some agencies just don’t get that we are getting results and that is all that should matter.

• Near-zero rejection and expulsion policy. In order to have victims we take all cases. We have always accepted any and all individuals for treatment and have tried to maintain a zero or near-zero rejection and expulsion policy, provided that the needed treatment procedures are made available to us. As long as you do what we want, and sign our many waivers, your child is most welcome to come here to be subjected to our abuse. So no worries, you will never have to deal with your child again! We do not limit those whom we accept to persons with certain psychiatric diagnoses and labels. In fact, once we have determined that the least restrictive and most effective treatment for a student is behavioral treatment, we really pay relatively little attention to psychiatric diagnoses which are essentially labels for groups of behaviors. Instead, we look directly at the behaviors that are the individual’s problem and simply set about treating each of those individual behaviors. Of the first two students we worked with, one was labeled autistic and one was labeled schizophrenic. We don’t give a flying fuck what disabilities your child has. Blind? We will zap her until she can see! Emotional disturbed? We will spank them till they get over it! We make no allowances for anything-in our school your child will do what we want…. Or else.



Our policy of near-zero rejection and expulsions, coupled with the success we demonstrated in treating our students, resulted in agencies referring their most difficult behavior problems to us. Most agencies do refer us! And please don’t read that bit about agencies not getting us-we wouldn’t want you to realize just how full of it we are. Seriously folks, no other school or hospital will let you dump your child off? They will be welcome here! Most of our referrals had been unsuccessfully served in numerous other private and public mental health and educational facilities before they were referred to JRC. Many of our students arrive directly from unsuccessful psychiatric admissions. Your child will live here with some of the most troublesome cases. Because we don’t give a shit what your child is like, we blend together children of all different ability levels. The psychotic child with violent tendencies will bunk with the child who compulsively needs to tap their nose.



• Active treatment rather than warehousing. We do not solve behavioral problems by simply accepting the problem behavior as it is and adjusting our treatment environment to allow it to occur; instead, our goal is apply active treatment and educational procedures to change the behavior so that the individual can function successfully in the normal environment outside of our treatment facility. While we are an institution, a warehouse for children whose families drop them off to us, because we will torture your child into behaving we like to be called an ‘active treatment centre’ because it sounds more friendly. Our goal is to employ untrained goons to spank and zap your child!



The fact that our mission is to provide active and relatively rapid treatment of severe behavior problems, with a no-rejection and no-expulsion policy, and not merely to serve as a care facility for children whose only problem is that they lack a normal home environment, explains some of the issues we have had with licensing agencies from time to time. Licensing standards that are set up for the latter type of facilities are not appropriate for programs that are designed for the active treatment of extreme problem behaviors. The fact that our mission is to quickly punish your child for any behaviour we feel is a problem, with all children’s disabilities not considered, and not only to house these unwanted children, explains why we have been allowed to torture children for this many years.



• Treatment with a unitary, coordinated and comprehensively Skinnerian, behavioral approach, rather than with a “multi-disciplinary” approach. The hallmark of JRC is that it is makes use of a behavioral approach and that this approach guides and informs all services provided by the agency to staff, students and parents. Although JRC has always employed nurses, speech therapists, physical therapists, psychiatrists, physicians, medical consultants and teachers, all of these special services are administered in a manner that is as consistent as is possible and practical with an overall Skinnerian, behavioral approach. JRC is probably the most consistently behavioral treatment program in existence.JRC is famous as the ‘school of shock’. We employ a wide variety or persons, from nurses to joe blows, and all of them are involved in torturing your child. Each and everyone of our employees is a sadist.



• Behavioral rather than a psychiatric, approach. A behavioral approach essentially views a treatment problem as one in which the individual has certain behaviors that need to be decreased and certain ones that need to be increased. The fundamental technique for accomplishing these increases and decreases is the application of rewards and punishments. We use as one of our most important measures of effectiveness, the frequency of problem and desired behaviors. Behavioral frequencies and trends are displayed on Precision Teaching Charts that had been designed in the 1960s by Dr. Ogden Lindsley, another student of Skinner. Behavioral treatment decisions are based on the data shown on these charts, rather than on clinical impressions, hunches, or observations alone.As mentioned before, we really do not care about your child’s existing disabilities. We will simply decide how we want your child to behave and then enforce our wishes by shocking, spanking and restraining them when they do not comply.



• Behavioral, rather than traditional counseling. At JRC counseling is done as a fully coordinated and integrated component of a total behavioral approach. We call our counseling “behavioral counseling.” This means, for example, the following: the counseling is not given on a regular schedule but rather on an as-needed basis; the counseling is not given at points where it might function as an inadvertent reward for some problem behavior that has just occurred; the counseling is given by clinicians and other trained staff that are employed by JRC, rather than being provided by persons outside of JRC; the content of the counseling session is not necessarily kept private between the counselor and the counselee, but instead is shared with other professionals in the agency as needed; and the purpose of the counseling is to enhance the student’s cooperation with, and progress within, the JRC program and to change his/her behavior toward the treatment goals set by JRC. We don’t give a fuck about your child’s tortured past. What we do care about is getting results. Fear is much faster, although a lazier, way of ensuring compliance. Everyone involved with your child has been screened by us and will not tattle.



• Behavioral procedures as the means of treatment, rather than the use of normalization. The dominant philosophy of the care of mentally disabled individuals during much of JRC’s existence, which continues even today, is that of normalization, also sometimes referred to as social role valorization. This approach, which insists that such persons should be placed in, and cared for, with as “normal” a set of procedures as possible, is frankly opposed to the notion of behavioral treatment. In behavioral treatment, normalization is accepted as the goal of the treatment process, but not as the means for reaching that goal. Indeed, behavioral procedures that will effectively eliminate problematic behaviors and help the student improve his/her condition and live a more normal life often have to be highly abnormal at first until the behavior changes sufficiently. As the behavior changes, however, the environmental conditions can and are made increasingly normal. The key word is DOMINANT. We ignore the standards of accepted behavorial treatment and do the opposite.



In this respect, JRC is like a medical hospital. The goal of most medical hospitals is to return the individual to good health and to a normal living situation outside the hospital; however, in order to reach that goal it may be necessary to do some highly “abnormal” procedures within the operating rooms and in the emergency and intensive care wards of the hospital. Like a hospital we get cranky when you try to remove someone from our care. We provide a physically colourful environment with an emotional sterile lifestyle.



• A complete treatment facility—i.e., not tossing the treatment problem to others when the problem becomes difficult. We view our program as a “hospital of last resort” where whatever behavioral treatment is needed will be applied to solve the problem. If a student becomes difficult to handle, we do not turn the problem over to a psychiatric facility or to the criminal justice system; instead, we adjust our treatment procedures to adequately deal with the problem behaviorally. Because we do not wish for other professionals to note the abuse your child has been subjected to, we treat all problems in house. If your child needs medical or dental problems, we will deal with it. If your child should be turned over to the police for their actions, instead we will up the intensity of their physical punishments.



• No or minimal use of psychotropic medication. We have always employed either no psychotropic medication at all, or the very minimal amount that is needed. Psychiatrists are employed to help us assess whether such medication is needed and to help us diminish or eliminate the psychotropic medication when it is not needed. Our psychiatrists make considerable use of our behavioral charts as they make these decisions. We can’t be bothered with medications-it is too hard to track and impedes on a persons ability to fully feel our punishments.



• Use of powerful rewards. In order to treat individuals without drugs, and without traditional counseling or warehousing, a program will obviously need alternative effective procedures that can be used in their place. In JRC’s behavioral approach this means, among other things, that first and foremost the program must have available as powerful a set of rewards as is possible. The first area in JRC’s present school building that we created was a large arcade-type reward area to motivate students to behave well and learn. We also created a reward corner in each developmentally delayed classroom, reward boxes for the teachers to use, a contract store where students could pick rewards to purchase and work for, etc. We are not aware of any other treatment center that uses as wide a variety and as powerful a set of rewards as we do. Not being tortured is a powerful reward. But on top of that we offer all sorts of things that are known to increase negative behaviours (sugar, video stims, electronics, flashy lights and confusing noises) to ensure we will have future opportunities to punish your child.



• Giving the parent the option to supplement the reward treatment with physical aversives when rewards and educational procedures alone prove to be insufficiently effective. If treatment with the use of rewards, loss of privileges, fines, other non-physical aversives, and educational procedures, prove insufficiently effective by themselves, then the parent should be given the option of supplementing the student’s program with carefully administered physical aversives. In the 1970s and 1980’s, JRC employed physical aversives such as the pinch, spank, muscle squeeze, water spray, vapor spray (mixture of compressed air and water), ammonia capsule, unpleasant taste, and white noise. During the 1991-1993 period, JRC substituted a 2-second remote-controlled shock to the surface of the skin for all of these procedures. This procedure is called the GED (Graduated Electronic Decelerator).



At the time that JRC was starting (1971), a movement to limit the use of punishments in the raising of children was already well under way. In that year, for example, Sweden passed a law banning the use of punishment with children. (Interestingly, no punishment was specified for failing to obey the law). The use of punishments in the education and treatment of children is still, today, vigorously opposed in certain quarters and has even been banned in the regulation of certain state agencies. OCCS regulations, for example, explicitly ban the use of aversive procedures. Every year or so a bill is introduced in the Massachusetts state legislature to ban the use of aversives. (This bill has never passed, however.) Because of all this, JRC and its parents have had to battle fiercely over the years to create and preserve this important component of its treatment. Not only will we zap your child at will, but we will give you equipment to do the same! Just imagine, everytime you are annoyed you can push a button and BAM! A child terrified to disobey you! As an added bonus, you can shrug your shoulders with a ‘the school says to do it!’ and feel blameless!



• Video monitoring, 24/7 of staff performance. The best-laid behavioral programs in the world are to no avail if they are not carried out as designed by the direct care staff. Ever since JRC’s first residential program in 1975, we have used videos cameras in all rooms to monitor staff, and sometimes student, performance. Your child will be videographed at all times, so that we can watch, rewatch and rewatch our favourite perverse moments of your child’s pain and torment.

This set of policies has always enabled JRC to provide unusually effective treatment. Ultimately, the parents and placement agencies are interested in is just that—effective treatment. As a result, during the period 1971 through 1985 JRC grew from 2 students to approximately 65 students. Our school and administrative offices were in Providence, Rhode Island during this period.

The fucked up system we follow allows us to torture, torment and otherwise create fear in children. Ultimately the parents and agencies that hand us children are just as effed up as we are and find sadistic pleasure in their charges pain and suffering.

From 1971 to 1975 JRC operated as a day school/treatment center. The program was approved by both the Rhode Island Department of Education and was licensed by the Rhode Island Department of Mental Health. In 1975 we opened a residence for some of its students in Seekonk, Massachusetts. In succeeding years we added other residences in Attleboro and Rehoboth, Massachusetts. These residences were licensed as group residences by the Massachusetts Office for Children (OFC).



We have grown! Please send us more children to abuse so that we can quote our number increase as being a way to validate what we are doing!

Wednesday

AoA understands murdering a child? wtf

http://ageofautism-whatever.blogspot.com/

I am tired of 'wrecking' my little man blogging when talking about the stupidity of the antivax aoa'ers.  so.. All those posts are now gonna be at the above link

Monday

Stereotyping atypical persons- just babbling

Little man has always been a bit of a conundrum- particularly when it comes to fitting him into the autism stereotype.
He has noticeable social deficits (see previous postings of humorous conversations for example) yet he has social ability and desire.
He was language delayed-has language output disability now with a vocabulary of a three year old yet he reads and comprehends reading material at a college level.  His understanding of language is complex, his spoken language formal.
He lacks an interest in most typical creative play-more so as a toddler, yet he is amazingly creative. He writes, plays role play games such as Dungeons and Dragons, draws and invents.
His fine motor skills are impaired yet he can paint war hammer miniatures.
He walks with an odd gait and is exceptionally stilted in his motions, yet he can run like the wind with no hint of clumsiness.
He is severely learning disabled, yet is an honour roll student with the help of oral testing to replace written.

I find it interesting, myself, that when he was younger his unique quirks were more obvious to me, yet we were unable to get a diagnosis for him.  In part because he demonstrated empathy, was able to use inflection of voice, interacted socially with his sister and was able to sit in class. Because he did not fit in with some of the false stereotyping involved with autism he remained undiagnosed for some time.

Yet now that he has developed in so many ways, has benefited from social thinking groups and interventions he was so quickly diagnosed.  interesting that a disorder that is marked by the atypical behaviours and processes of the individual there would be so many associated stereotypes.

Little man blends in better now, in some ways while standing out more in others.  Being in such a small town has some major pluses, in my opinion.
His classmates are used to his quirks and lack of social grace.  He is bullied less than I feared, stood up for more than I had expected and appreciated almost as much as I had hoped.  He has experienced the irritation of being stalked by someone 'crushing' on him and dealt with it much smoother than I had anticipated.  He continues to contribute to the classroom, helping other students with math concepts while learning to accept that he in turn needs help with written requirements.

His speech has improved some, although I am still frequently asked if he is from (new york, Chicago, France, Newfoundland, England to name a few).  Little man has figured out that he needs to compensate for his 'accent' with hand gestures, patience and care.  He has no troubles understanding other persons with strong accents amazingly enough. 

His new hobby (besides inventing) is to create intricate role playing board games.  All of these games have complex rules including character creation and advancement although I have yet to see one that favours the player over the 'monsters'. The creativity involved as he creates new races and worlds astounds me, yet he seems unable to imagine others intending him harm.  So naive for a young man turning 12 and headed to middle school....

Watching my children grow has been the most rewarding process.  I can't wait to see what other stereotypical behaviours little man prove are atypical to his diagnosis of being atypical.

Sunday

The difference between you and me.... you are a loon

I had a giggle reading this post at AoA  where Julie goes on a rant explaining that the difference between her and Allison Singer is that Julie doesn't. (Julie doesn't believe or trust anything or anyone that doesn't feed her paranoid beliefs).

Her writing is incoherent from the beginning and I was pleased to see it was...well... boring.

In my oh so humble opinion, the difference between Julie and Allison is that Julie is a loon.

Tuesday

AoA's David Burd is a bird brain

I read this article at Age of Autism and was left confused.  Where was David Burd getting this...'data'?

Firstly, I live in Canada.  I am also the person responsible for keeping our 'Pandemic Preparedness' binder current at work and as such I receive updates on current flu clinics, flu trends, outbreaks etc.

David Burd starts off by with this little gem; "Last September, a large study by Canadian scientists Danuta Skowronski and Gaston De Serres threw Canada into an uproar with their findings showing people who had prior "seasonal flu" shots were much more likely to come down with newly appeared H1N1 (Swine) flu illness."

Saying that people that get the seasonal flu shot are more at risk for H1N1 is inflamatory.  Many of the persons that get the seasonal flu shot are more at risk for all flu virus's.  (My employer has Crohn's for example, and the medication he takes leaves his immune system weakened.).  I also do not recall any uproar, other than people being lined up and turned away for the shots as our government was not prepared for the high demand for the H1N1 vaccine.  By the time I was able to take my family in for the shots, my daughter had already been ill with H1N1.  The rest of us still got the shot. 

The study he is talking about is unpublished according to this article. This article also states that "Marie-Paule Kieny, director of the WHO’s initiative for vaccine research, said no other researchers had presented similar findings and it could be a “study bias”, although the Canadian investigators were well known and capable."

Burd goes one a bit more then says "All this was front page in newspapers across Canada".  Huh? What newspapers?  Not where I live.  A quick google shows me that key words "Canada, H1N1, study" brings up the AoA post by Burd, the article above and yet no links to any major newespapers.  How odd.

He rambles on about the conspiracy to hide this unpublished studies findings from the American public and brings up what is fast becoming AoA's new punch line "in the immortal words of NBC's Dr. Nancy Snyderman on national TV, "just take your damn flu shot.""

He then goes into some rambling about New Brunswick, hammering in his point that he has no idea what he is talking about-but the AoA'ers lap it up! Its a conspiracy! It's vaccines! (I notice that what it is not is Autism), so all the little AoA sheeples are happily bleating.

Then David writes in third person, telling us about his professional acheivements in technology related fields.  He consults on surgical devices related to intellectual property rights (patents) and claims that he was in the first grad class of 'rocket scientists' (quotes are his, not mine).  All of which of course make him more than qualified to write about vaccine studies.

One comment caught my attention:

"Request for authors: For those of us interested in original sources, please reference the source of studies referred to and please provide urls that lead to specific pages such as the Canada Fluwatch website mentioned in this article. I think I found the correct website by googling, but several hits were returned. I also was not able to glance at the home page and find the specific information mentioned.

I'd live to pass along articles such as these to skeptical friends in the field of science, but know without sources, they will not take the articles seriously. And it is frustrating to take time to try to recreate an author's sources. Even spending much time and effort to track down sources, it's often necessary to preface them with "I think this is the source but am not positive."
Thanks in advance for those who will begin doing this! It will save your readers a lot of time!
Posted by: L Brasher "

Burd replied:
"Dear L Brasher, The keywords 'Canada' and 'Fluwatch" go right to the source. You could also add years such as '2010' or flu season phrases such as "2009 - 2010"

However, what is provided by Fluwatch are the wonderful tabulations of all the Provinces in Canada, the respective flu seasons, cases per Province, etc.
It is me, the author of the piece, that uses these facts, and makes deductive analyses, and conclusions. Canada's Public Health System, like the U.S. CDC actually believes it is good to give flu shots (tho they are rethinking in light of Skowronski and De Serres).
Hope this helps -- David Burd"

So there you have it! Mr Burd has used a table that he is not qualified to interpret and written this garbage article for the entertainment of the AoA crowd.

Beauty, eh?

Thursday

Frontline, Autism and knotted Knickers at Age of Autism

I agree with Anne Dachel that the Frontline Show "The Vaccine War" is getting a great deal of reaction from the online autism community.   Just for Fun, Giggles etc I have corrected the rest of her write up to suit myself.
WARNING!!! CONTENT MAY BE UPSETTING, RUDE, SARCASTIC, HURTFUL ETC TO SOME READERS.  GET OVER IT.
Sarcasm by A Sodee

Tuesday night’s PBS Frontline show, “The Vaccine War,” is getting a lot of reaction within the autism community today.  Before watching Frontline, I’d heard enough about the show not to expect the typical false 'two sided' coverage. The very title was misleading.  The word “war” makes one think of a conflict with two sides.  That’s what PBS presented to the public and anyone with even a rudimentary understanding of the vaccine controversy could recognize that finally the media was getting it right.  There are indeed two sides to this battle-facts vs feelings. 

On their website, PBS promoted this show saying, “In The Vaccine War, FRONTLINE lays bare the science of vaccine safety and examines the increasingly bitter debate between the public health establishment and a formidable populist coalition of parents, celebrities, politicians and activists who are armed with the latest social media tools -- including Facebook, YouTube and Twitter -- and are determined to resist pressure from the medical and public health establishments to vaccinate, despite established scientific consensus about vaccine safety.”

In truth, what we witnessed on PBS was an example of media  reporting of the facts.  Logical parents have grown weary of the mantra, “vaccines cause Autism, it's a conspiracy!.”  How many times has this issue been declared settled?  How many studies have been announced showing vaccines don’t have serious side effects like autism?  This debate shows no signs of stopping, despite the ardent efforts of shows like Frontline.

The emotional yet unfounded claims of parents were noted and dismissed on Frontline.

A growing number of parents say that vaccines can cause autism and that more studies need to be done.  Frontline reported that the science is in.  There’s no need for more research because multiple, large-scale studies from around the world have looked at the question and the answer is no. 

Ten of thousands of parents report that they feel that their children were normally developing until they were vaccinated.  These parents believe that their children regressed and became autistic due to vaccinations.  While discussing these parental concerns Paul Offit, MD, Anthony Fauci, MD and Eric Fombonne, MD explain that regression following vaccinations is mere coincidence-after a decade of extensive research scientific studies have ruled out vaccines as a cause of autism.

Some parents are worried about the number of vaccine in the schedule, another feeling based theory that is contrary to scientific findings.  Frontline had Melinda Wharton, MD, MPH in her Public Health Service uniform telling us about all the disease-preventing vaccines that are out there now.

The autism numbers have been portrayed as "skyrocketed coincidentally with the dramatic expansion of the vaccine schedule".  Frontline called autism “mysterious” and said it “appears” to have increased.

On their website, PBS included this interview with Montreal psychiatrist, Eric Fombonne.
In it Fombonne explained why autism is not an epidemic.

I think a better name for the show would have been, “The Anti-vaccine Movement: Misguided and Dangerous.” 

PBS portrayed parents as impassioned and determined but totally without any science on their side.  We see Jenny McCarthy, JB Handley, Barbara Loe Fisher, and Robert Kennedy Jr, along with a number of non-vaccinating parents.  To the general public the message was clear:  The medical community is lined up against them.  Their movement is based on fraudulent research (Andrew Wakefield) and celebrity leadership (Jenny McCarthy). 

Thank goodness Frontline did this show.

It is about time mainstream media gave publicity to these dangerous emotional based claims and allowed the experts to explain the facts.
The sad truth is that despite the best efforts of health officials and their few followers in the media, the public was not listening.  Some parents were scared.  Autistic children are more commonly diagnosed and no one can reasonably explain to hysterical parents who are determined that vaccines cause autism, where they’re  coming from. 

A lot of the Frontline show was about the power of the Internet.  Offit explained that people are getting phony information from watching YouTube videos for example.  The Internet is the dangerous influence, further explain some  health experts.  Fisher, McCarthy, and Handley use this forum to influence the public.  Parents are exempting their children and we’re losing herd immunity.  This has become a national health threat.

There was nothing new in what the trained experts had to say.  We were reminded that they’re focused saving lives.  Nothing was new from the other side either.  Parents continue to hang on to the false belief that vaccines can harm children.  It’s easy to imagine what PBS hoped to accomplish with this show. A logically balanced view of the so called 'debate'.

Frotnline thankfully did not use the shady tactics seen too many times:

They did not play into the conspiracy theory aimed at spreading fear and hatred.  The did not lend weight to the handful of emotional parents that 'just know, just feel' that autism was caused by vaccines.  Media sources like PBS demonstrated that this controversy is over.  Logic and facts (Scientific studies) have proven that vaccines do not cause autism.  Any logical clear thinking person can accept this.

There was another element that was thankfully missing from the PBS coverage.  The fake experts ranting that regardless of science, facts and evidence they know better!   PBS clearly demonstrated that while some parents are concerned about vaccine safety their concerns are emotion based and contrary to evidence.  PBS also demonstrated that none of  the well-credentialed scientists and doctors disagree with the main-stream medical community regardless of what the anti-fact profiteers would like us to believe.

 While PBS had  interviewed Jay Gordon, MD and Robert Sears, MD they were not included on the airing. Neither of them had any fact based information to share, perhaps.

The only way the story presented by Frontline works is if we just forget about hysterical ranting and face facts.  We have to understand that there’s been no real increase in autism  The vaccine schedule has not been upped to three times what it was in 1983.  The only epidemics we need to worry about are the ones caused by non-vaccinating parents.

The real problem is, HYSTERICAL PARENTS ARE NOT GOING AWAY.  They will continue to misprepresent statistics (example "One percent of children have it.  One in every 70 boys")  We’re talking about hundreds of logically impaired parents who will live long lives, many severely active online and totally misrepresenting and twisting facts

These parents may try to change the subject and ignore the reality of what’s happened to our children.  The resurgence of preventable disease, the stereotyping caused by misrepresenting children with autism, the harmful alternative medicine being practised on children by their misguided parents- but the public will hear more and more about autism everyday in the news.  Parents and self touted experts that are fear mongering with statements like this "As these affected children age into adulthood, they will cost billion of dollars each year for their support and care and their numbers will be replaced by another generation of children.  This is the scariest scenario I can image.  And no one is talking about it." will have their small followings of loons but very little clout.


Those that think Kate McMahon should have asked these two questions: What if vaccines turn out to be the cause of the autism epidemic?  What if all those questioning vaccine safety are right?- well persons who still are asking the questions we already have answers to can not take in the answers.  Vaccines have been proven to not cause autism.  The theory of an autism epidemic has been thoroughly debunked, the persons who claim vaccines are a conpiracy causing autism have been proven wrong.   

Perhaps now it is time for parents to learn acceptance for their children and advocate for better support and inclusion in schools and communities.

Sunday

Toys R Us supports Autism Speaks, wtf

Friday I had little man in Vancouver.  We had stopped at the mall to check out the toystore.
As a side note I told the clerk we should cure stupidity first...

1-800-Toysrus (1-800-869-7787).
Email us at customer-Service@toysrus.ca

Dear Sir(s) and Madame(s),

My name is Angela XXXXX.  On friday, April the 9th, my son and I purchased some items from the Toys R Us store in Metrotown Mall in Vancouver, BC.
As we were paying for our items, the clerk asked if I would like to donate $1 to support research for a cure for autism.My son, who happens to be autistic, was crushed.  He does not understand how people-who are supposedly better at social understanding than he is, can say such hurtful things.
Autism is not contagious, not a disease and not curable. To say it is devalues him as an individual.

Entering your website to obtain this email address and seeing the 'Autism Speaks" logo was dissapointing to say the least.

The general consensus in the Autistic Community (North America wide at least) is that Autism Speaks does NOT speak for autistics. 

Autism is not a curable disease. Straight from ACT ( Autism Community Training, a Canadian resource found at http://www.actcommunity.net/AI/FAQ.htm#Sec1Autism )
(begin quote)
----------------------------------------
What is Autism?
Autism is a developmental disability that typically appears during the first three
years of life. It is a neurobiological disorder that affects about 1 out of 500
individualsstar. Individuals with autism demonstrate characteristics in three areas:

. Difficulty forming social relationships
. Impaired understanding and use of language
. Restricted patterns of activities and interests

Although all three features must be present for a diagnosis of autism, the specific
behaviours exhibited can vary widely from person to person. Autism is considered a
spectrum disorder because the symptoms and characteristics can be present in
different combinations and at different levels of severity.

The disorders on the autism spectrum are:

. Autistic Disorder
. Asperger’s Disorder
. Rett’s Disorder
. Childhood Disintegrative Disorder
. Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS).
--------------------------------
(end quote)

Autism speaks recently released a video that had Canada and USA Autistics and their families in an uproar.
The video itself gave autism its own entity that can sneak up and steal your child.  In it Autism Speaks insinuates that Autistics are 'lost' 'shadows' in need of curing -completely devaluing them as individuals.

Here is the transcript of Autism Speaks Video Release "I am Autism"

I am autism.

I’m visible in your children, but if I can help it, I am invisible to you until it’s too late.

I know where you live, and guess what? I live there too. I hover around all of you.

I know no color barrier, no religion, no morality, no currency. I speak your language fluently, and with every voice I take away, I acquire yet another language.

I work very quickly. I work faster than pediatric AIDS, cancer, and diabetes combined.

And if you are happily married, I will make sure that your marriage fails. Your money will fall into my hands, and I will bankrupt you for my own self-gain.

I don’t sleep, so I make sure you don’t either. I will make it virtually impossible for your family to easily attend a temple, a birthday party, a public park, without a struggle, without embarrassment, without pain.

You have no cure for me. Your scientists don’t have the resources, and I relish their desperation.

Your neighbors are happier to pretend that I don’t exist, of course, until it’s their child. I am autism.

I have no interest in right or wrong. I derive great pleasure out of your loneliness. I will fight to take away your hope. I will plot to rob you of your children and your dreams.

I will make sure that every day you wake up, you will cry, wondering ‘who will take care of my child after I die?’ And the truth is, I am still winning, and you are scared, and you should be.

I am autism.

You ignored me.

That was a mistake.


Talk to your own local autism community-do some research, please. 

As for myself and my son who mistakenly shopped at your store-we will be unable to patronize your business for as long as you are supportive of such a group.



I am also taking my screenshot of your website with its Autism Speaks Logo to my own autism websites and local community. 
For the purpose of disclosure, a copy of this email is also being posted online as well as printed and shared with my local community.
If you require contact information aside from email, let me know.
Sincerely,
Angela XXXXX

Some online Resources demonstrating how autistics feel about Autism Speaks

http://counteringageofautism.blogspot.com/2009/09/autism-speaks-should-learn-when-to-shut.html
http://www.aspiesforfreedom.com/showthread.php?tid=15482
http://www.change.org/autisticadvocacy
http://autisticbfh.blogspot.com/2006/07/autism-speaks-poisonous-ideas.html
http://autisticamoeba.wordpress.com/2010/03/30/why-autism-speaks-doesnt-speak-for-me/
http://www.nowpublic.com/culture/autistic-people-protest-autism-speaks-walk-osu-columbus-oh
http://www.squidoo.com/autistics-speak-for-themselves
http://www.bonbongazette.com/2010/04/why-autism-speaks-doesnt-speak-for-me.html
http://www.dailykos.com/story/2007/5/19/223159/715
http://www.facebook.com/group.php?v=wall&gid=22231492801
http://leftbrainrightbrain.co.uk/2009/09/autism-speaks-media-campaigni-am-autism/

Friday

HURRAY! Autism Awareness Day!

There are so many good posts out there already:

Kim Wombles at Countering  talks about awareness and how even is this there is a 'divide' between those of us wanting to create awareness and acceptance and those who want to create an awareness of the need for a cure.
I agree with Kim-but more importantly SCIENCE shows Kim to be correct-autism is not a disease.  Screaming for a cure is akin to screaming for a cure for red hair.  Autism is genetic. 

HERE is another wonderfully enlightening post discussing bullying, language and the R word.

And, yes, there are many blogs hollering about the epidemic (woo) of 'autism on the rise (more woo).

But the long and short of it is that people with autism are just that-people.  They have the right to be loved, treated with respect and dignity and the right to live life to its fullest. 
This means they also have the right to accommodation where required, the right to programs as needed, the right to understanding and support and the right to independance.

Just like everyone else.

Regardless of your stance on autism (genetic vs mercury poisoning) all persons with autism have the right to happiness, the right to an education, the right to be themselves.

It was a tragic as a blue clear sky after days of rain

trag·e·dy (trj-d)Of course I can remember, more than a decade ago, watching my son and worrying. So many little things that each by themselves were nothing to be concerned about, yet when put together it seemed obvious, to me, that something was going on.

But not every moment of every day was filled with worry. There was so much joy and peace in my house. With Little Man only one year younger than Princess I had my hands full, true, yet I love my children. Thank Goodness for BB (Big Brother) who was always there to hand me a diaper, catch the Princess and rock Little Man when I needed the help. Princess loved Little Man so very much.

She loved him as she let him take the blame for the toilet paper incident.

She loved him when she dumped that 5 gallon pail of flour on his head. (Just as a side note to other parents out there-you can NOT wash flour out of hair. Water and Flour = Glue).

And I am sure she loved him when she decided to paint his fuzzy head with diaper cream too.

(You might have guessed that Princess was one of THOSE toddlers that gets into everything.)

Little man rarely got into mischief-and never on his own.

While I found watching him figure things out to be a fascinating pastime, I was concerned about his seeming disinterest in the people around him.

I talked to the health nurse, my doctor, my husband, my mother and my friends. Yet no one wanted to look at the whole picture-they all assured me that each of the behaviours I pointed out were so very typical. I was so tired of being told that children each develop and learn at their own rates. I was frustrated and in all honesty, worried too that maybe I really was imagining it all.

Looking back I realize that I was not explaining myself well and the feedback from family and doctors was well meaning. My family, friends and husband all love Little Man-just the way he is-which is a beautiful thing. Princess spoke for him-that could indeed explain the speech delay. Heck, there were days where I SWORE they had a secret language, just like twins.

My son did not look up at me when I spoke to him. He could hear me just fine-he would stop moving for a moment when I spoke, but he rarely would look at my face.

He did, however, like to lean back against me.

He did not initiate play with his sister and unless she made incredible effort to be part of his play he would not acknowledge her. He would only play with his trains. He threw incredible fits for no reason that we could discern-the first time he did this I thought he was having a seizure. He did not seem to react to tone of voice appropriately, or facial expressions. He walked on tiptoes and never did crawl. He had no interest in potty training, freaked if his hands got sticky, would not play in the sand box if it had any damp sand. He did not talk. He had a half dozen words until he was nearly five. Sometimes they were used in context, sometimes not. He rarely reacted to what was said to him. The sound of music brought on fits.

As a mom, of course I was worried. I had his hearing screened, his eyes tested (try those tests with a child that does not let you know that he understands!) When he was approaching 4 years I used his fascination with Thomas the Tank Engine to potty train him-it was incredibly simple yet he still wets the bed frequently.

When he started school the teachers did notice some difficulties. He received speech therapy (still does) and they recommended a psych-educational assessment. He refused to participate in circle time, gym, singing, dancing and various other activities. My days were spent in the classroom with him as temper tantrums were frequent. I waited for the psych-educational assessment and continued to teach my son coping skills.

Having the school teachers recognize that something was going on with my child was wonderful. More importantly, to me, was a parent I met who's son was also starting school that year. Her son was simular to mine in many ways. I pointed it out to her the one day with a flip comment like "Both our boys ignore the other kids, huh?"
She answered me with "My son is autistic too." I remember being startled. Autistic? Isn't that banging your head, flapping your hands and talking in a monotone?
I told her the truth, that I had no idea what was going on with my child-other than he was frustrated and struggled with things that other children his age seemed to have no problems with.

(Interestingly enough, our children took a shine to each other. )

That day marks the beginning of my education concerning autism. I remember how relieved I was to have a name for what was going on! Having another parent to talk to that had experienced all the same concerns was also an extremely wonderful experience.

Of course there were days and moments of worry, coping with behaviour I did not understand, dealing with people in public who also did not understand.

But it certainly was not a tragedy.
It was not a disaster.
No loss of life.
No devastation.
No disastrous event.
Heck there was no event-there was no one thing that happened where we could say AHA! That event there! That was AUTISM!

As for other mistaken beliefs I have come across in my own personal experience:

My son does have feelings, an incredibly sharp sense of humour and the ability to express compassion. And by the way? He heard you ask me that. He is not deaf either. I was amused when he asked me "Does it not show a lack of compassion to say such things?" in reference to your words.

My son does know right from wrong. And it is very rare that he will do something that he knows is wrong. If there is a rule he has been taught he follows it. And expects you to follow it. He will happily let you know if you are not following a rule-not to be mean, but rather because sharing what you know is the right thing to do.

While my son does need the safety of routine he does not start yelling and hiting his head (rainman referrence) if his routine is disrupted. There was a time when every seemingly minor change in his schedule did result in agitation (as in anything from needing to rub his hands over his side pants seem, over and over while humming softly to typical tantrum that all toddlers seem to throw from time to time)-yet this has lessoned over time.

My son can speak. Eloquently. His speech does lean toward more formal and slang is rarely used. In social situations it takes him longer to respond than a NT child might need. My child does not name-call, insult to hurt (although if it is a truth he will say it not understand why this truth might hurt feelings, ie 'please do not sit in that chair. That chair is not for fat people. Use this chair. This chair is safe for fat people') and he does not say things he does not mean. In twelve years he has lied to me FIVE times. Three of those were an attempt at sarcasm.

My son does not equal autism. He, like every other person on our planet, has his own combination of personality traits. He does have autism. He does process situations differently. If you met him you might not even notice.
(Depends on the day and what he was doing and the context of the situation you meet him in.)

My son does have a sense of humour. He has a very sharp sense of humour.

My son had to be directly taught and coached in social situations. He points out that there are rules for social sitations that NO ONE follows. That some of these rules require telling LIES.
He is right. Sometimes he simply does not find it important to 'fit in'. I have noticed that this happens when his NT peers are being...well... mean. My son does not bully. He does not crave popularity either-he will happily tell the popular child that their choice are incorrect and why.

My son does not see physical differences in people. He can not tell me if his classmates are white or purple. He does not notice speech impediments, or care if you are in a wheelchair.
Same with facial disfigurement, stims, twitches and any other such thing that a NT child might feel is a stigmatism. He classifies people as 'nice' 'not nice' 'my friend' and 'not my friend' as well as 'child', 'adult' and 'teenager'. Lately he is differentiating between 'boys' and 'girls'-mostly because one young lady has decided she will in fact by my sons girlfriend.

Yes my son does have behaviours and speech patterns you might find unusual. Feel free to ask him about them. He values people that are honest enough to ask. He will talk frankly about pacing in a circle. Some 'stims' he does not even seem to realize he does.

Little man is working on his own post.


Wednesday

Apology Accepted, Appreciated and Admired

Little Man and I appreciate Smockity's apology. In the words of Little Man "Apologies are just words but some words need to be said". It also takes a special kind of person to be able to publicly apologize-someone with courage and strength.

Personally I would like to thank Smockity. Her posts, regardless of how much it stung to read it, brought to light that although our many voices have accomplished much-we have a long ways to go.

Autism awareness IS our responsibility. All autistics, their families, care providers, educators, friends-all of us need to continuously find opportunities to share information and perspective.

We need to remember that most of us had no idea, really, what autism was until we had a reason to learn about it.

Thank you Smockity, for the post that made many of us realize that many people simply do not know about or understand autism and how it impacts a persons behavior. Thank you Smockity for being brave enough to apologize, for hearing the voices that reacted with hurt.

And to all those that responded with vicious name calling and threats, shame on you. Double shame as I am sure those of you who did respond so inappropriately will not apologize.

Anyways, I look forward to seeing everyone busy posting for Autism Awareness!

Hugs and Laughter
Sirenity

Sunday

Romance LOL

Friday after school, Step Dad Tim had papers to gather up from the little man's teacher.
A girl from little man's class noted Tim's approach.
G "Little man! Is that your Dad?"
LM "He is my step dad"
G "Ask him!! Hurry!! little man ask him"
LM "I will ask him" (Face beet red)
G "QUIIICCCKKK ask him little man!"
Girl runs up to Tim dragging little man with her. "Little man's Step Dad!! Hellooo!! Little man wants to ask you something!"
G "Go on ask!"
LM "um"
G "Can little girl.... go on!!!"
LM "Ummmm. Tim. Little Girl wants to know if she can come to my house after school today. Which is now, as school is completed for this day. "
Tim of course grinning away "Well.."
G "Oh please little man's stepdad! Just for a bit?"
Tim "Your dad comes to get you this afternoon little man."
(Tim see's that little girl is completely crushed.) "But you guys can plan something for next week."
G "YES!!" scampers off.
Tim turns around to tease little man, but little man is HUSTLING to the van. (Hustling in capps as this has never before been seen. Little man takes forever to get shoes, jacket and assorted gear on.)

Later, I ask little man about his 'girlfriend'. He informs me that YESSS he likes her. She enjoys Bakugon (or whatever) and if interesting. But that NOOOO she is not his friend.
I point out that having a female friend is ok.

Little man says "Yes a friend that is a girl is ok. But this girl has decided that I need to be her boyfriend and I do not want this."

Laughing, I make a comment to the effect of 'she can't make you' to which he replies-

"yes that is correct, she can not make me her boyfriend. She can make me miserable if I dont do what she wants. This is what she does."

Oh my.
She is coming over monday. I am taking the afternoon off work so that I dont miss it!

Thursday

You Can Not Cure Stupid

I was quite excited about the whole retraction of Wakefield's so called findings.

But as the day wore on and I read the comments springing up all over the internet I began to understand a fundamental truth.

Stupidity truly cannot be cured. Regardless of how many ways the wakefield - mccarthy - oprah - safeminds - ageofautism etc etc etc followers are shown that autism is in FACT a neurological difference not a disease, that vaccinations do not in FACT cause autism, that woo is in FACT woo....well regardless of any court case, science, logic, glaring truths these persons will insist on being right. They will not allow the smallest bits of information that do not coincide with their already firm beliefs to enter their narrow minds.

They simply will not.

I have seen this phenomena before. It is not restricted to conspiracies, pseudo science or autism in general. I am sure Kim can give us a proper label for it :), but it does seem that a great majority of people are unable to intake information that contradicts their beliefs.

So while I am still smiling gently over the long awaited retraction of the bogus wakefield study, I am not holding my breath that it will change much for the persons whom were already sucked in to believing the woo. I hope that the new comers to the fray will be less likely to fall into a woo-wagon in light of the recent retraction.

But I will no longer hold out in hopes that such wonderous events will cure the stupid that already exists.
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