I'm editing.
Every night.
It's beginning to exhaust me.
My image files are huge, so while they take 2 minutes (each) to save, I'll write. Last weekend I sat around a huge table and listened to 7 other Moms (and a few Dads!) share about their Autistic children. Aden is about to start receiving in home ABA therapy, and we (we-meaning whichever one of us can make it) have to attend three Saturdays of parents training. The training was incredibly mind numbing (I basically consider myself an Autism expert at this point) but the stories were riveting, heart breaking. I've made it a bit of a habit to cry in front of total strangers. Long gone are the days when I could pretend everything was perfect, or even fine. Nothing is perfect, and some days aren't fine, some days are horrible.
I did a lot of listening on this particular Saturday. A year ago, Aden was a different child. Today, he is very high functioning. He's extremely verbal, and he expresses love. These parents have children who do not speak. 12 year olds that do not speak. 5 year olds in diapers. They use double barrel locks on all of their doors to keep their kids inside. One little girl will try to rip your shirt off if it's blue. Blue is her favorite color. She will drag a chair out into the yard and spin on it, staring at the sky for hours. Another little boy will eat anything. Anything. Leaves, paper, toys, clothes. These parents talked about the years that it took for them to convince their pediatrician that they needed a referral for testing. These parents are dying inside because they can't help their children.
Autism is not a Developmental Disorder (shame on you, school districts). It is not a Psychological Disorder (shame on you, Psychologists).
Autism is a NEUROLOGICAL Disorder. Specifically, a NEUROTOXIC Disorder. Our children's brains have been poisoned, and each child's poison is manifested differently, with varying levels of severity. Some children are born with a weakened immune system. When we are pregnant, we expose out babies to toxins. We have ultrasounds, and a flu shot, or take medication to stop our pre-term labor. There is no way to know your child's immune strength in advance. Then we immunize them when they are born. Then we spray for bugs, then we put delicious smelling lotion on their bodies, then we feed them baby food from a jar instead of making or own with organic produce, then we microwave their bottle, then we immunize them again, then we brush their teeth with toothpaste full of fluoride, then we clean the house with chemical cleaners, then we give them an antibiotic because they have another ear ache, then we see a rash, then we put more delicious smelling lotion on, then they have diarrhea, then the DR says, "it's from the antibiotics" because the DR is ignorant and doesn't see that the rash is caused by an over growth of yeast in your baby's gut that is caused by too many antibiotics. The your baby slowly become pale because the yeast is eating holes in his gut and he is leaking out all of his nutrients. Then you immunize him again, and you think that he may die from it because he's so ill that he can't lift his little blond head up. Then you take him to urgent care twice and back to the DR twice and beg them to make him better. Then NO ONE will write in his chart that he is having a reaction to his MMR and you want to SCREAM. Then you think he is getting better because he is running around and playing once more, but he isn't getting better. The poison is spreading. He starts repeating your words, obsessively. He is obsessed with his routines and the way things look. He opens and closes doors until you force him to stop. He stares at lights and out windows. His body is still with you but he is gone, somewhere far away. You clap your hands to bring him back. He lines up his cars. He lines up his blocks. He lines up his animals. He lines up his entire life because he can't tell you that his brain is falling apart. You have no idea. Then someone slaps a label on him. Then you ask your pediatrician what you can do medically that will help him and he says, "NOTHING". Then you...
Then you...
Then you...
Then you...
Then you....want to die....because someone has told you that you can't help your son.
This is Autism.
Then you pick yourself back up and fight. It's a long road, but a year later, it was the right road to follow.
Tuesday, December 7, 2010
While I Edit....
Posted by Katie at 9:54 PM
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5 comments:
such a journey you are on sweetie. beautiful post.
Thanks Hai....I didn't intend for it to go that way!
Love your writing style. Thank you for sharing and your honesty.
as always, beautifully written... thank you for sharing bits of your family's incredible journey through the world of Autism. Your testimony sheds understanding, grace and hope for so many others. Keep writing, Katie. Yay for Aden's improvement!
I know you are crazy busy but maybe I could talk to you sometime. Logan recently got a diagnosis of PDD-NOS. This diagnosis came from Indio Mental Health services and I plan to take him back to Loma Linda. I am just wondering if there was a chance you would have time to talk. Thanks!!!
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