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Sunday

Twyla responded to my post on AoA

this is the dialogue:

@Twyla: You said, "Julie is not just saying that her daughter is not going to be like she expected, but that her daughter is not who she would have been without the vaccine injury. Julie will never know who Eve would have, could have been without our f-d up out-of-control vaccine program. There is a difference."

Firstly, I quite deliberately did not tackle the science vs pseudo science aspect of Julie's post. I instead was reaching out to her, in hopes of reminding her that while raising a child with special needs does indeed include worry, anger, fear in ways that parents of NT children do not fully understand it can also be rewarding, joyful and beautiful. If you would like to get into a discussion on autism as 'vaccine damage' we can do that. Be aware though, that I have read the AoA version of the studies, read studies on pubmed, researched the founders of AoA, Safeminds and Generation Rescue. I am happy to invite you to a logic based debate. Julie's post, however was not about science, it was about feeling angry and bitter over her child's autism.

Twyla you say "Lovethosekids, you are looking at Julie's post in a biased way."

Of course I responded to an emotional post with my own bias. This is the nature of being a human. She also posted with her own bias. As you are now.

Twyla you say "How can you say, (in regard to my comment of 'you seem to feel there is not a single shining moment for your child, no loving fond memories for the baby book, no moments of joy, no pride in her accomplishments?') That is not what comes through at all. Clealy Julie loves and enjoys her child and is proud of what she can do. But baby books are meant for the "neuotypical" with spaces to show when typical milestones were met, etc. There is an incongruity between our babies'/toddlers' lives and that depicted in the typical baby book.

Please explain where in Julie's post it is clear that she loves and enjoys her child, and is proud of what her child can do?
As for a baby book, I still happily write in mine. The fact that my son's first words were at age 4 are still a fond memory.
I have never seen a baby book that shows when typical milestones are met, although I am sure there are some. Get one that doesnt if it disturbs you. For your information my oldest child walked at 9 months, but couldn't ride his bike till he was 10, and he is NT. Not all children develop the same, or on any schedule. More so with a child with a developmental disorder, but milestones are still present and I would think they deserve to be celebrated.

Twyla you say (in response to my comment of "But it is important too, in my humble opinion, to not stay immersed in anger and bitterness.") "Duh. Julie says that too. She is writing about grappling with lots of emotions. Sometimes we have to express it all in order to then move on and live our lives to the fullest."

I did say I was assuming her post was a onesided rant. I also acknowledged the need most people have to vent.

Twyla you say "As far as cancer, of course it would be unbearable to watch your child go through cancer treatment, and worse yet to watch your child die of cancer - absolutely unbearable. But I think what Julie is pointing out is that if your child is diagnosed with a medical condition such as cancer, there are existing protocals and specialists, whole sections of hospitals, support systems in place. Whereas for the medical issues affecting kids with autism there is so little support from mainstream medicine, so little knowledge of effective treatments, and not even much research on treatments for the kinds of issues Eve faces."

There are existing protocols and procedures for autism as well. There are behaviour therapists and interventionists, social scripting, speech therapy and a variety of other professionals who are trained in assisting an autistic child in gaining skills, trained in teaching parents on how to accommodate and parent an autistic child. Our family doctor referred us to the pediatrician and child psychologist-which meant our medical did in fact cover it. They in turn, upon assessing our child reffered us to the appropriate professionals. Again Covered. Of course, this assumes you have extended medical services. (in both our scenario with autistic children and in the scenario of having a child with cancer.) If you refer to unscientific 'treatments' then of course it is not covered. Many of the treatments parents are clamouring for have actually been proven to be dangerous and not effective.

Twyla you say "In many circles there is not even curiosity to try to better understand these issues; parents are told things like, "Oh, it's part of the autism. It's genetic. Nothing you can do." or "It's part of the autism. It's psychological. He's constipated because he is withholding poop in an effort to control his world."

In the circles I am exposed to no one speaks like this. My sympathy to you if your circles do. There are always things you can do to help your child, it is most certainly at least in part genetic and shame on anyone who is not curious at the very least as to the things that effect their child's well being.

Twyla you say "In conclusion, your comment is very judgemental and you don't fully understand Julie's article."


Well Twyla, I am sorry that you felt I was being judgemental. What I felt reading her post was concern.

Sincerely
Angela

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