This is a special edition of the Monday blog. Today, the release day for The Fallen O’Connell, I’m not going to talk about the book and characters but about something that happened years ago. It’s a memory that still has the ability to bring an uncomfortable knot to my stomach and a tension that pulls across my shoulders. It came up this week and has stuck with me, something I haven’t thought of in a very long time.
While sitting across from me, then a young single mother, an elected politician said I needed to give my son better vitamins.
Do you want me to back up a bit? I’m talking about my autistic son. As a young single mother, I was fighting to get my son a much-needed intervention, which isn’t cheap and is paid out of pocket. Anyone who has a family member or friend with an autistic child will have some understanding of the toll this process can take. There I was, along with a group of mothers, all of us actively pursuing funding for our kids. For years we did this. We wrote letters, we got petitions signed, we made phone calls. Within this group were mothers who had the financial means we didn’t, and they took the governments to court and fought a six-year battle, an extremely emotional battle, for all of us.
Any of you who have fought for a cause will understand the toll it takes on you, physically and emotionally, which can last years. Some of us were also tapped out financially, because we were paying for rent and food as well as scraping enough together to pay for necessary therapy for our autistic kids. This was before I was published, during the time that I was actively pursuing my dream, up at three in the morning, writing. There we were, with our feet on the ground, calling all our local politicians and school administrators, talking to anyone with the political clout to make things happen, to make change happen.
Many told us to go away, but becoming the squeaky wheel is the only way to make change for the better. You’ve all heard that if you want real, meaningful change to happen, you have to fight for it, and you have to speak up. That was drilled into me by one of the mothers when I was first navigating a very unfriendly system, which doesn’t make getting a diagnosis for your child easy. In fact, it’s a very broken system that works against you, and if you don’t have the financial means, it can be that much more difficult—but it’s not impossible. Nothing is ever impossible! I will admit, though, that navigating a system that works against you had me wanting to yank all my hair out in frustration at times. My son’s behavioral consultant once summed it up nicely, saying, “They say one thing and then do the opposite.” I personally lost count of the times that happened. If you’re not careful, pessimism can start to take root.
But let’s go back to that morning. We were sitting in a dingy brown conference room with a long table and several chairs. After calling several times and booking yet another appointment, there were three of us mothers, looking for support at the federal level to fix a problem that has since skyrocketed, because, as everyone is aware, autism rates have exploded, though the reason for that is something you’ll never get any political party to address or actually investigate. So there we sat with all our free time—which was none, by the way! I was scared shitless, because we were talking to the kind of people I had never believed I was on the same level as. Doubts still plagued me: Who the hell are you to be here? You’re a nobody. Yes, I really did have to fight that way of thinking.
As he checked his watch, the government official appeared to listen, kind of but not really. We had been allotted a small time frame because he had other meetings, more important ones, apparently. Instead of giving the usual statement of “I’ll do what I can” or “Thanks for coming,” he said the only thing they would be willing to do at the federal level was provide a website for information on autism. I stared at him, feeling sucker punched and tongue tied, because I couldn’t get my brain to come up with a reasonable response other than Huh? I had just realized he wasn’t really listening to anything I had said, and he had no understanding of what was at stake, the toll autism takes on families. He went on to add, “You need to give your kids better vitamins.” Then he was gone.
It’s pretty disheartening when you fight for something only to be slapped in the face by people who hold the power and control the money, how it’s spent and funneled. Do I know what was going through his mind or why he wasn’t willing to hear us? I have no idea. Why am I sharing this during a global pandemic? Likely because, although times have changed, it’s still important to add your voice to a cause to make lasting change. Every change ever made has been fought for, won through battle by people who sacrificed so much. We all make mistakes and stumble and say things we wish we could take back and redo, and it’s always easier to sit back and do nothing or throw your hands in the air, saying you’re just one voice and you can’t make a difference. But one voice reaches another, and that does very much make a difference, even though, at the time, it doesn’t seem that way.
Just know that as scared as we were, as I was, and despite how in over my head I felt many of those times, I still showed up. I advocated, made calls, wrote letters. It was the same effort I put into making my dream of becoming a published author come true. Have I been out of pocket for my son’s autism expenses? Yes, and I’ve lost count of how much, but you do it. You find the money, you keep on, and you do the best you can. My son is doing well. All my kids are. Just remember, whatever is important to you, you’ll make it happen no matter how scared you are. Put one foot in front of the other, stand up for what you believe in, and don’t take no for an answer. Only you can make your dreams happen.
And on that note, here it is, my latest book in the O’Connell series, The Fallen O’Connell. And a note for those who pre-ordered on Google Play, check the file you received. It seems that Google Play messed up for one of my fans and didn’t send the new release. Send me an email firstname.lastname@example.org if you had any problem with receiving the new release.
NY Times & USA Today bestselling author Lorhainne Eckhart brings you The Fallen O’Connell, “Now over eighteen years later, the truth about Raymond O’Connell has been revealed, and it has come at a cost. That cost is measured by the loss of life, the loss of innocence and the loss of what could have been.”
“Hold on to your seats! This book is filled with so many twists, turns and surprising revelations that you won’t be able to put it down until you have read the last page.” (Rebmay)
What’s coming next? Three more books about the O’Connells—and a brand-new series.