Three or four years ago, which put us three or four years into biomedical interventions for my daughter, I thought I had it all under control. I thought I knew about everything to treat and recover her from Autism. People asked me if I could talk to their brother-in-law’s sister’s daughter because her child was recently diagnosed. I became a Rescue Angel on Generation Rescue. I pulled aside parents of affected kids at school and slipped them the number of the local DAN.
Then I joined Facebook.
I’m not really sure how it happened or who was my first connection to the Facebook Autism community, but slowly – no, actually is was quickly – I had made so many connections to parents of children affected by that thing called Autism. You know, the name they appoint to a child who was just wacked by too many vaccines.
I met parents of children who were just starting biomedical treatment on their 23 year old son and parents of children who were diagnosed the prior week. I connected with some people who were actively political and some who were quietly gathering ideas to help their kids. I met parents who were at their wits end, choosing between keeping their home and treating their child. I had a mother move into my house while her husband took the kids to live with his shrew of a mother so they could save the rent money to pay for treatments. (That, for the record, was a delightful four months as we would sit each night and talk about, well…anything.) I met people who were, for all intents and purposes, strangers in the city for dinner. I invited people to my house for dinner when they were in the area to see doctors. I went to Saint’s home and was welcomed with open arms and homemade lasagna. And she didn’t even care that my daughter tore through her basement like a tornado.
And then, over time, groups started forming. Groups that were secretive and specific to certain treatments. It was like the Underground Railroad of Autism. We talked about treatments being used and doctors consulted with. When a DAN doctor we were using suddenly passed, I reached out to the Autism mommas on Facebook for recommendations. I had a name in less than a day.
I spoke to people from all over the United States, and some in other countries. I was referred to doctors in Ohio, New Jersey, Pennsylvania, Massachusetts, California, Georgia and New York. And, yes, I went to Ohio. Four times. It’s a beautiful state.
Through Facebook, I was first introduced to homeopathy and learned about neurofeedback. I was practically beaten over the head by none other than Princess to start oral chelation. And ideas are still coming. Just this week I have learned about another protocol that I am reading about and considering for my daughter.
Last night I saw a status update that read, “My head spins sometimes with all the treatment options. I am grateful there are options.”
That is the point. There are options. Many of them. Find them. Make connections with people who have come before you. Make connections with people who have come after you and have those pieces of information that you missed in the head-spinning world of recovering your kid. As Goddess said best in her recent post, Find your Family.
Find us. We are here with you. Some of us know more than others; all of us are learning. We’re in this together as we learn the continued options.
Some genuinely good blog posts on this website, regards for contribution. “My salad days, When I was green in judgment.” by William Shakespeare.
Another fantastic piece, Jerry <3
Thanks, Poppy!
“underground railroad of autism”….love it!
Thanks, Sugah.
We are ALL Harriet Tubmans.
Came to leave a comment about what a wonderful read this was! Then read David’s comment. Awestruck. TRUE. So very very true. Tragic.
Tragic…> Devastating…> Frightening…> Fighting…> Winning…> Helping…> Loving.
Everything you said could have come out of my mouth. The community and the sharing of resources/information are so important. My quest for information was in the pre-facebook era (2004-2008) so then it was Yahoo Groups and staying up all night trawling the internet for information. Since then I’ve become an open book, sharing my story and resources with anyone who asks. Friends of friends of friends. People in other states that I’ve never met before. Anyone who’s needed the help, I’ve been there to offer what I know from traveling this nightmare of a road.
Love the Jerry hand, BTW. Grateful for our Family, indeed!
Jenny –
Hey – a kindred spirit! You know how it goes: Without love in the dream it will never come true.
I also started on Yahoo and still use it for chelation information. It’s been incredibly valuable. I’m really excited to learn about stuff beyond what I already know and that’s often happening from parents who’ve been at this less time than I. Who woulda thunk?
Thanks for visiting the blog~
Jerry
<3. Yesterday, we took the kids (non-verbal autistic one and all) to Old Sturbridge Village in MA. It was a cold winter's day and the place was fairly deserted. And yet, in that paucity of a sample of local children, we found another family with a son much like ours: beautiful, excited, and hopelessly caught behind a neural web that made him sputter and chirp in wordless fit of pacing and twitching. And I thought, 30 years ago, you wouldn't have found two of my son on the most crowded day of the year. And here, in the dead of February with 20 kids in the whole of the park is my son's neurological peer. 'Epidemic' doesn't begin to describe what's happening to our babies. Revolution indeed.
<3 right back at you, Mr. Anderson. Yes, yes, yes….neurological peers everywhere we turn. Everyday. You see that "LOVE" in revolution? It's backwards, but it's there.
Beautifully said..so much like the road I have been on for years now. I knew I was considered an expert when the local hospital added me to the 1-800 contact list. Last fall I began to get weird phone calls where people said things like, “Are you the autism expert? or Is this is autism place?” I would be thinking, “Well you called me, I guess you know who I am.” But I never said it out loud. Years of people calling or emailing I have heard it all. Then one afternoon a man said, “Can I get your number, so I don’t have to call THE DESK to contact with you again?” and I asked him what number he had called to reach me. He told me “Oh I called 1-800 THE DESK, and asked for autism help and they rang you, aren’t you an office or something?” I almost fell over, I wonder if the hospital knew I was bio-med 100% and sending parents to a DAN! that is not allowed to practice within the hospitals circle. Or maybe someone somewhere within an office knows full well, the medical community damaged these kids, you might as well turn them over to someone who has learned how to undo the damage, and turn these kids around. Keep talking, keep reaching, I see recovery everyday in this business…and while my son did not fully recover, he did beat autism, and that is a huge, HUGE victory!
Be blessed.
Hi Cheryl –
Thanks for your comment. I am particularly loving that some of the advice that’s floating around has nothing to do with a DAN. So many families can’t afford uninsured doctor visits or have been the DAN route and are now moving forward with other treatments, such as AC chelation. We need to keep talking. Sometimes even the most seasoned of us, like you and me, can learn new tricks.
Jerry
Everyday Jerry, something new hits the list, everyday there is another road to walk down. Just look at the different means of chelation in the last 10 years. I do my best to stay on top each day and to pass on all I learn to anyone who needs or wants help. I always tell parents, there are two paths, one the education or behavioral way you educate and reach your child, and two the biomedical means that can be as little as changing the diet to larger ideas in chelation, bio-feedback and so much more. I never promise a recovery, I never promise to know what will work best, but I do promise not to keep parents who want to learn in the dark. At the end of the days it’s really all we can do.
All my best to you and yours,