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On The Normalization of Autismization

Tear

Managing Editor's Note: Please welcome our newest Contributing Editor, LJ Goes.

By LJ Goes

I published The Normalization of Autismization, found HERE,  as a note on facebook early last month. In 3 short days it was picked up by blogs that boast international readership, and featured on the radio talk show, Linderman Live! By day 5? Translated into Hebrew. Who knew a note fired off in the heat of battle with the bugs infesting my son's intestines could have touched the hearts and lives of so many people?

I have received over 100 emails and notes detailing the experiences of others coping with the devastation of chronic illness, immune dysfunction, and bowel disease that go hand and hand with autism. Sentence after sentence about the harrowing and often life-threatening components of this illness that our children deal with filled my inbox and facebook page. They are still pouring in. Here are some paraphrased examples of what I have been reading over the course of this week.

"My 16 year old son is still in diapers, this is my life."

"Why did this happen to my son, what could he have done to deserve a life like this?"

"It's like you were a fly on the wall in my house. How could you know?"

"I've lost my faith, but thanks for writing your story just the same."

One mom, who will forever remain etched in my mind's eye had a child near recovery only to have her ex step back into the picture, vaccinate him, and leave again once the autism symptoms returned. She lost her job, has no place to stay, oh and, a neurotypical child to raise, too.

This is the reality of autism. Not "feel good" walks. Not big parties with celebrities. No loners who go on to become multi-bazillionaires. Unless of course, you are Bill Gates. The reality of autism is physical illness, depleted bank accounts, nervous siblings, and exhausted parents. "I lost my faith..." she said. This one I can't shake and I pray for this mom daily. I could not get out of bed without mine.

A week later (with only one additional and minimal poop smearing incident) here is a status update on all things Goes:

Liam had a breakdown. I know 3 year olds tantrum and lose their cool, but Liam had a torrential breakdown over the idea that Noah might steal his favorite dinner, a hastily prepared, organic pb and j. It was not on gluten free bread and he knew it, because upon presentation he said, "Ohhhh, yummy bread!" He does not have a gluten sensitivity and organic spelt is cheaper than GF bread so we serve it up when we can. Despite his joy over his favorite lunch (with the added bonus of it coming at dinnertime no less) some sort of emotional breakdown occurred as he sat down to eat. Through his tears he kept repeating "Noah get sick! Noah get sick, No momma, no food, Noah get sick." I tried to explain that I would make sure Noah did not get his food, and if he sat at the table and ate it, with me by his side, he had nothing to worry about. He cried for an hour and twenty minutes. He could not calm down enough to eat. Know any three year olds that in tune to their older brother's issues that they boycott a meal for fear the elder may fall ill? It did not help that Noah circled the table the entire time, shouting "BREAD! BREAD!" At the top of his lungs. Mads held it together for quite some time before she snapped and screamed at them both, "BE QUIET!" Her eyes were huge, she was shaking and pointing at them in her vehemence. Liam went to bed with rice milk and 3 apple slices in his belly.

Noah has recently taken to hitting Liam to initiate play and finagle away a toy he wants. He will bat the toy out of Liam's hands then grab it and run in another room). Besides bedtime wrestling, good night kisses, and salutations this is his ONLY interaction with Liam, ergo Liam has grown fearful of him. Often he will actually raise his forearm to shelter his head when Noah comes bounding down the stairs in the morning to greet us.

Sentient readers, tell me, how does one explain to a three year old that this is simply autism? And he must, for lack of age appropriate phrasing, deal with it?

Noah is reprimanded for this action, asked to apologize to his brother, and removed when we witness it. But I simply cannot discipline, all three, all the time, at every moment of the day. I do not, contrary to urban folklore, have eyes in the back of my head. They all have needs, some more than others, but they are all my children and I love them equally and as such I give them each my full attention at different points throughout the day. A lot can happen in 2 minutes in a household with autism.

Our neighbor (the same one that got bitch slapped the week before) held a 1st Birthday Party for her little girl yesterday. She went to great lengths to include Noah. I went round and round and decided it was best if I stayed home with him while Dave went with Mads and Liam. Hard decision. I will tell you why I made it.

This was my neighbor's daughter's day. I cannot control Noah around unsafe food. Pizza, brownie cake and the best of the all, Capri Suns! Not my neighbor's problem. My problem. He loves balloons. There were probably 100. He would have tried to capture each one. They acted as decorative end pieces for 10 banquet tables with polka dotted table clothes and ornate centerpieces. The centerpieces would have been dismantled and shredded in a matter of seconds. My problem, NOT my neighbor's problem. He has recently started a round of anti-fungals. This makes him HIGHLY reactionary. If you give him something to eat and he does not want it, he will throw it at you. Could be soup. Could be a carrot. Doesn't matter. During anti-fungals, this behavior reigns.

As the neurotypical contingent of our family departed for the birthday celebration, I heard Noah, just barely audibly utter, "Bye Mads" from my post in the kitchen. I went to the window and sure enough, she was walking into our neighbor's house. Within seconds he was at our dining room window, the window that frames our neighbors back yard. He kept circling the table, then jumped on it, which I corrected at least a dozen times. I then got him something to stim on, because I knew he would start talking if I did. Sure enough, when he had something to focus on he sat right beneath that window, shredding celery. I plopped down right next to him to observe.

At this time, I implore you to stop for just a moment and think about the psychiatric descriptions of autistic behavior.

He appears to be in his own world.

He is indifferent to other people's feelings.

He wants to be by himself.

He doesn't seem to have any interests.

As I sat in silence by my handsome boy these are the words he spoke:

"Daddy! Daddy! Mads, hi Mads! Balloons! Balloons! Circles, green, pink, green, pink. Pink Balloons. Liiii--aam drive. Jake drive! Oh no, Liam crying! Oh no. Oh no. It's okay, it's okay. Okay Liam. Okay Noah. It's okay. No hit. No hit Noah. No. Not nice. Hi Mads! Mads? Mama, juice! Juice! Mads...ball...play...play...PLAY!" He watched them for over 30 minutes, pawing at the window. He looked at me sitting next to him and we both teared up. He threw his arms around my shoulders and cried, "No! Noah, No! No hit. Oh, mama."

Does this sound like a kid in his own world? Sound like a kid who doesn't WANT FRIENDS!? To me it sounds like a child trapped in a body that he cannot control. It tells me there is a mind in there that understands with great clarity what is happening around him and is 100% cognizant of his inability to participate. And it makes him terribly sad. He is desperate to belong. His father and I, as well as his siblings, are very social creatures. He is no different. He is stuck.

In the face of this reality, does it not appear that perhaps the psychiatric, dare I say, scientific and clinical observations about our children, appear a bit sophomoric? For you Fancy Nancy fans, that's a fancy word for stupid. One dimensional. Insipid. Inadequate. Insufficient. Lacking. Lazy. Bush-league. Meager. Unqualified. Deficient. UNACCEPTABLE.

Again, I avail you to all this personal information in yet a second installment, not for pity. I do this to show you our psychiatrist friends are wrong. Our scientific community is wrong. Our medical community is misinformed. They all boil the reality of our children’s conditions down a bunch of subjective criteria created by pharma-influenced psychiatrists and random statistical data that supports their personal suppositions. They formulate theories based on information gleaned from archaic databases entered and managed by countless, careless data entry personnel. Our institutions have lost the ability to focus on individuals. Human beings. Our children.

Take this test, if you meet this criteria, this is your diagnosis. Take this drug. If you do not feel better you are doing something wrong. This way of doing business has amassed an entire generation of chronically ill children, worldwide. My husband put it beautifully when he stated, ""Parents know their kids better than any doctor, any bureaucrat or any pharmaceutical executive. At the end of the day, we do not go away or back down, because we (especially Moms) know what we saw and we know that our kids were injured by vaccines. It is not scientific; it is common sense."

He speaks the truth. Friends, I know this affects you. If not your own family, then your extended family, your friend's and colleague's children. According to the AAP the rate of chronically ill children in America is now 54.1%. Think about that. As my friend Ginger puts it, "They haven't even got a 50-50 chance of being born healthy...". This is a marvelous statistic if you are a pharmaceutical sales representative. A nation that creates generation after generation of ill children is as good as money (big money!) in the bank. As I implored in my last note, please educate yourself on this most important topic.  Visit www.canaryparty.org.   "Like" the 83 Canaries and my FB page, The Misuta Project. Help us show our government, medical and research institutions that our children's health is a greater priority than protecting those who profit off of their illness. 

 LJ Goes is Managing Partner of The Misuta Project, LLC.  She is an Executive Member of the Illinois Council for the Canary Party and mom to two neurotypical children, Mads, and Liam, and a son who suffers from autism, Noah.  

Comments

oneVoice

Thank you for the link patrons99 or I should call you super99.I could not agree more.It is time to break away from "mother pharma".

AussieMum

Australia

Spot on patrons99!

I was attending a meeting this morning with my son's occupational therapist, speech pathologist, his carer and the special education co-ordinator.

My son's diagnosis is - Pervasive Developmental Disorder, Global Development Delay and Autistic Disorder. I continue to remind them that he is not "Just Autistic."

In Australia the word "autism" is being normalised each day by the way it is thrown into normal conversation and the way it is perceived by the media, doctors and paediatricians. Apparently, it is a label that deserves no more attention than a typical child. That is the reality we mum's with children who are autistic & have other disorders face everyday.

My country needs a good "kick up the arse!"

Elizabeth - AussieMum

Nadine

I very much agree with what has been said. My 2 year old son has not been diagnoised yet, but parents out there like myself DO KNOW out kids better than any doctor. He has his evaluation on Thursday.

Im from Australia and we do not have mercury in out childhood vaccinations. So I don't believe that was the issue for my son, HOWEVER I do believe that because most children with Autism have immune systems that are not working properly, the viruses in our vaccines cause any already over stressed immune system to shut down. This is why DS cannot detoxify any viruses, metals etc out of his body from his vaccinations.

Our children with autism do care, they do feel and they do understand whats going on. Im waiting for the day my son comes out of this and defies all those so called medical experts out there.

Martha Moyer

It is particularly devistating to have a handsome son with autism who has paralyzed bowels because an institution refused to continue a toileting program that was showing some success. They didn't tell me what they had done...just said he was finally going on his own. They lied!

Jen

"loners who go on to become multiple-bazillionares," yeah, that's a really inaccurate representation of the autism community that bothers me. I love my "A" in the class I work with. He is absolutely lovable and charming, can remember any band/music information. That doesn't mean I wouldn't wish away his sensory and intellectual impairments that affect him. Heck, I'm pretty sure he'd be as lovable without those.

pass the popcorn

LJ, Thank you for expressing the stark contrast between how psychiatry "sees" our kids and how they really are. I look forward to more of your columns and have no doubt they'll be translated into even more languages in the future. After all, we've exported autism all over the world.

Angie

He appears to be in his own world.

He is indifferent to other people's feelings.

He wants to be by himself.

He doesn't seem to have any interests.

This sounds NOTHING like my two boys with ASD, BUT it sounds EXACTLY like the pediatrician that they once had.

tiredmom

Thank you for writing this. I am so sick of the phrases "in their own world", "indifferent", "not understanding feelings". Most of our kids are just the opposite, so sensitive and intune to the world around them that it overwhelms them. Many of them have very high levels of social intelligence. It's the so-called experts who are too insensitive to see past our children's outward behavior and have spent decades spewing out lies about them to the rest of the world.

Alison MacNeil

LJ, you get my family and this Autism nightmare and articulate it so well that it's almost painful to read. My six year old autistic son has never been invited to a birthday party. Two doctors have recently told me they think the stuff I am doing to heal my son is why he is sick. I am the problem. How far we haven't come. Maybe one of those docs could teach my son to make a clay statue of me and smash it. I'm fed up and I'm not taking the piss anymore.

I'm so glad A o A is going to give us more access to your writing, you rock my new friend!

JenB

Thank you! I see and feel so much of the same emotions expressed here in my family's daily experiences. The outward circumstances of many affected families notwithstanding, I think we are all often emotionally in the trenches, under fire. I do not know how to convey what that is like, even though I feel it is incumbent upon me to warn others. I believe your writings do that and improve understanding of what our children, NT or not, are experiencing.

patrons99

There is nothing "normal" about autism. As has been their pattern, CDC and AAP are trying now to redefine "normal" to include ASD. We need to start taking names and holding people accountable to the public for their actions in this nightmare of vaccine-induced diseases.

Here's a recent article from the International Medical Council on Vaccination by Dr Rima E. Laibow, MD titled "Dr. Rima Replies to the Vaccine-Pushing, Child-Destroying Tragedy of “Standard Medicine”"

http://www.vaccinationcouncil.org/2011/06/09/dr-rima-replies-to-the-vaccine-pushing-child-destroying-tragedy-of-%E2%80%9Cstandard-medicine%E2%80%9D/

Grant Flower

Awesome just what I looking for baby! I totally impress my dear. Thanks!

Benedetta

PS
It was a good article.
Love the phrase "Normalization of Autismization"

And ask is it normal to actually have control over your 25 year old man, that he is allowed, or not allowed to go to a friend's wedding on a rather short road trip?

At 25 years old, I had been married for five years, I was a parent, I had taught 2 years - highschool (science/biology/chemistry), I was working on my master degree, I had gone on several very long road trips (18 hour trips). Even my daughter although she has two degrees has not driven herself on long road trip more than over a couple of hours - she does not have the attention for it or the stamnia, I think.

Benedetta

I am so sorry Goes.
I forgot how old is Noah? I hope and pray it turns around for you, and this anti social bussiness just is not true! They want very much to be a part of it all.

My son has PDD-NOS and epilepsy. It took me forever driving him everyday 30 minutes away (me esp back and forth) to oh yes, a community college!

We have moved twice, and left behind the first time my son's middle school friends. (No highschool friends).

One of his middle school friends called three days ago. He has been working in Wal Mart and is getting married!!!!!

My son is going to drive by himself one hour and 45 minutes away to get back to his home town. He has never driven that far, he wants to so very bad- it has been a life long dream for him, that he has express a million times. He is 25 years old. I hope I am not making a mistake. AND YES I KNOW HOW LUCKY I AM TO BE WORRYING ABOUT THIS!

Julie Leonardo

Thank you for posting this LJ. You have a way of writing in a manner that brings it all home. Your description of Noah is perfect, and your presentation of the AAP stats is sorely needed. Our Nation's kids are sick, and it's not only because of fruit roll ups and lack of veggies. Kudos, LJ!

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