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.