Some time ago, one of my old posts and accompanying image (below) popped up in my FB memories. It had me remembering the early days, the early worries, and the early choices I'd made, ones I now wish that I hadn't.
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 about autism, seizure, and mito-related concerns, I don't tend to run to medical people first. I go straight to the parents.
That habit goes back many years. It started when I needed help at the beginning of our journey. Parents set me straight then. Parents set me straight now. They are the ones actively researching. They are the ones sharing ideas, reporting on the latest research and sharing results of their child’s therapies - and they do so with no strings attached.
Parents weren't clueless like some of our son’s doctors had been. Not only that, when another parent's child got better, because some kids do recover from autism, these people didn't clock out. They didn't leave the community. They stuck around and continued to help!
I've said it before, and I'll say it again. I'd be lost without the moms and dads I've met in this community. I wouldn't have learned what I needed to...
I know about vaccines, and autism, and special education. I’ve read the history behind vaccines and understand 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 awful realizations and because of greed that intruded in our children’s lives… Parents should have been able to trust their doctor, their government, but no. Instead of trust, they got betrayal. Formed for parents like me who also felt that stab of betrayal, this community stands out speaking up against the atrocities.
They also offer something else that’s equally important: help, hope and the truth.
I jumped into this community too many years ago. I’m happy to have found it, but I also thought that by now I’d be long gone from it. My son wasn’t one who recovered, which is why I am still knee-deep in it. 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, and in the local support groups that we’ve made for each other. They were created for us, and by us, to survive what we wished we’d known but didn’t.
Our eyes are now opened.
So much has been revealed.
We will never be clueless again.
We seek the truth we wished we never thought we’d ever have to find and make sure that what we discover is shared. This has become, and likely will remain, a way of life.
Something else I've said before that I think others will agree with - I hate the reason that brought us together. I do. We found each other on account of our children’s injuries, after their diagnosis, or because of mistreatment they, or we, encountered. I wish we never had to be here 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 am now been blessed to know.
They are my teachers.
They are my guides.
They are my hope.
Thank you to all who came before me, and thank you to all who’ve joined our community recently. What a blessing to be supported by such a phenomenal group of people.
Cathy Jameson is a Contributing Editor for Age of Autism.