While prepping a review of my friend's new book - which is full of incredibly useful information about autism, vaccines, and so much more, this old article and accompanying image (below) popped up in my FB memories. I didn't think it was a coincidence. A lot of what Julie shares in her book parallels our story. It had me remembering the early days, the early worries, and the early choices I'd made that I now wish that I hadn't.
Some of what I'd written in that old article about what I wished I did and didn't know still holds true, like this statement:
I know too much, so much but then on some days, not enough.
That's why I still ask questions. That's why I still read as much as I do. That's why I still reach out to people I trust to lead me on the right path. Who are those people? They are other parents. When I need answers for autism, seizure, and mito-related concerns I have, I don't always running to medical people first; I go straight to the parents.
That habit goes back years and years. It started when I needed help in the beginning. Parents set me straight then. Parents set me straight now. They're the ones actively researching. They're the ones sharing ideas, reading material, encouragement, and results - and they do so with no strings attached.
Parents aren't clueless like some of our doctors have been. Not only that, when another parent's child gets better, because some kids do recover from autism, these parents don't clock out. They don't leave the community. They stick around and continue to help. I've said it before, and I'll say it again. I'd be lost without the parents I've met in this community. I wouldn't have learned what I needed to. I wouldn't have known what I needed to know...
I know about vaccines, and autism, and special ed, and about all those acronyms. I’ve read the history behind vaccines and that autism can be a result of vaccines. I hear about the greed, the cover-ups and the on-going deception. I know more now than I have ever known before. I belong to a community because of that knowledge. A community was formed because of some awful realizations and that greed that intruded in our children’s lives. Formed for parents like me who also felt that stab of betrayal, this community stands out speaking up to offer help, hope and the truth.
I jumped into this community too many years ago happy to have found it but also thinking I’d be long gone with a recovered child by now. His needs and the damage done to his health are still so great, so I remain. I hang onto every word shared—in the biomed community, on the special needs parenting boards, in the local support groups that we’ve made for each other. Created for us, and by us, to survive what we wished we’d known but didn’t. With that revelation our eyes are now opened. So much has been revealed, and we will never be clueless again. Seeking the truth we wished we never thought we’d ever have to find out, and making sure that what we discover is shared, this has become and likely will remain a way of life.
Something else I've said before too that I know others will agree - I hate the reason that we found ourselves together. I do. I wish we never had to be here together like we are. But since we're here, we might as well work together. And, for the most part, we do. I try to do anything and everything I can for the kids and for the parents I've been blessed to know.
They are my teachers.
They are my guides.
They are my hope.