A guest post by autism recovery mom Julie Bailey Obradovic
Being a part of the autism controversy has been life altering in ways beyond description, and many of those ways haven’t been good. This advocacy is hard work. It breaks your heart, beats you down, tests your faith, alters your relationships, and changes people’s perception of you. It costs you spiritually, professionally, financially, and emotionally. It can even cost you your reputation.
And to make matters worse, when this work is at its hardest– dealing with media on a relentless war path, made up stories and scare mongering, censorship, and being called a liar for the fiftieth thousand time– we can sometimes turn on one another. That’s when it’s the worst: seeing your family in turmoil.
There are many days that I think, “You know what? It’s been a good decade. I gave it my best. I played the role I could. I wrote my book. I’ve said what I have to say. I’ve helped raise a ton of money. I’ve testified. Been to DC three times. Been to the UN. Let’s put this behind us and move forward. My daughter Eve is doing great but could still use my help. Focus on that. Focus on me. Move on.”
And honestly, that was my plan.
But then nights like last night happen. I saw Vaxxed for the first time. I saw the whistleblower story put on film. I saw so many friends on the screen that I have been lucky to know and work with over the years. I saw an audience in front of me inspired to help take up the work. I saw Donnie Wahlberg and Jenny McCarthy in front of me. And I am grateful. This work is heavy. We need more hands.
But that’s not what reinvigorated me last night– it was a random conversation in the hall before the movie. A mom was with her affected (and well recovered!) son as we were getting our tickets. She had just come out of the film and said she recognized me. She wanted to say hello.
I asked her if I’d need a tissue in the movie; if it was going to be hard to watch. She said yes and I told her that I don’t know how many more tears I can cry. Told her I just finished writing a book and that I hope its publication moves me forward once and for all.
She said, “Well, I’ve been able to manage my tears and pain pretty well over the last many years, so this wasn’t too hard tonight.” Then she went on, “There’s this article called ‘A Bump in the Road‘ that was written years ago. Every six months I take it out and read it, cry my eyes out, and get it out of my system. It’s me. Every word of that article is me. You should read it. It’s amazingly therapeutic.”
I stood there shocked for a moment before responding. Humbled. “I wrote that article.”
And that’s true. I wrote it. In 2009, I think?
Her eyes widened and she said she never put that together before. She thanked me profusely and said she can’t wait to read my book. We hugged, and she thanked me again.
She said that I have no idea what gift I gave her by writing that article.
My only point in bringing this up is that a lot of people have asked me over the years what they can do. Not so much parents with an affected child, but the folks who love the families dearly that do.
People desperately want to help, but they are conflicted and confused about their roles. On the one hand, they don’t want to put themselves in the line of fire. On the other, they want to help. They want to do something. But for whatever reason, people usually think it has to be some grand gesture. It doesn’t.
So here’s what I always say. Do what you have the ability to do. I was given the ability to write, so that’s primarily what I have done. That’s really all there is to it.
However, there are a MILLION other things you can do besides writing. Here are just a few ideas.
Have a fat wallet? Write a check for a grant for medical treatment for an affected family to Generation Rescue. Donate to TACA. Donate to Thinking Moms Revolution Team TMR grant. Donate to Age of Autism, a non-profit blog giving you the daily news about the epidemic.
Have a big heart? Befriend the mom and dad down the street whose child will never be in dance, baseball, or whatever with your child because their money goes to speech therapy, doctor visits, and tutoring. Invite them to be a part of your neighborhood social circle– over and over and over until they realize you mean it. They need you.
Have a big mouth? Share your story. Share your friend’s story. Go see the documentaries on this subject and then tell everyone to go see it.
Legally minded? Call your legislators. Write your legislators. KNOW WHO THEY ARE. Share info about special needs trusts. Be an advocate for special education families. Go with them to their IEPs for free.
Religious? Offer to watch special needs kids during service, mass, whatever, so that those parents can still attend together. Put together a special needs care room. Educate the religious groups at your church. Imagine never being able to go to mass as a family. That’s a reality for a lot of families many people don’t think about. Help them. Pray for them.
Socially gifted? Tweet. Share a post that will start a conversation.
Crafty? Make a craft and donate the sales at a fair to the cause of your choice. Do the same if you host house parties for jewelry, etc.
Book worm? Buy books about the subject and give them to the library. Host a book talk or sponsor an author to come speak.
Grandparent? Find the other affected grandparents in the area and start a social group.
These are just a few ideas. We all have different gifts. We all bring unique talents to the table. Find yours. Then use it. You never, ever know who you will impact or how profoundly by doing so.
If each and every one of us who truly cares about the truth, this issue, and making things right once and for all could do that, I am confident the time will come very soon we will no longer need to fight anyone, but rather just help those who have been affected.
But as I learned last night, it may be that not a single thing you do ever moves the needle towards justice a little bit. That’s part of the difficulty of this issue. You work and you work and you work, and these people still aren’t even subpoenaed. Maybe never will be.
Even so, your true role just may be that you let someone know you that you get it, that you’re there for them, that you see them, feel them, and that they and their child matter.
And you know what? That’s equally if not more important.
Julie Bailey Obradovic