I was at the Art in Bloom Festival yesterday, talking with someone at a booth about a hot political issue. I actually agreed with him on the political issue, so we were making small talk, and I was telling him a little about our sweet Anna, and describing how a potential bill would affect her (and our family, as a result). The following [paraphrased] conversation ensued. See if you can spot where he went wrong and where I started to get frustrated. For special needs parents, it should be easy.
Me: Because she’s disabled, homeschooling her wouldn’t be as easy as the other two. It would make a bigger impact on our family to have to homeschool her.
Him: Have you tried detoxing her? I’ve seen so many families improve symptoms of autism with detoxing.
Me: Well, it’s not autism. It’s a genetic disorder, so… can’t really change that. It’s not a toxicity issue.
Him: But still, there’s so much in our environment, and surely a good detox would help with her symptoms.
Me: No, not really. She has a protein missing on a chromosome. It’s in her DNA. Nothing will change that.
Him: You might be surprised how much it can improve.
Me: Okay, yeah. We’ll look into that.
Friends, can you see the problem here? I’m telling this guy, who knows nothing about my daughter, nothing about Rett Syndrome, that no amount of detoxing will change the fact that there is a mutation of MECP2 on her X chromosome. But he continues to push it. If he had simply said, “Oh, it’s genetic. Ok, different situation,” that would be fine. I’d be happy with that. But I had to lie and say we’d consider detox to try and get rid of Rett Syndrome (the other Rett moms are surely doubling over with laughter at this point) just to get him to stop talking about it so we could move on in the conversation.
Don’t be this guy.
Don’t try to push your own opinions or agenda or perspective on special needs parents who know for an absolute fact that your remedy will not work to alleviate their child’s disability.
You all know (or you can look back at other posts and see) that I am all about natural remedies. I use homeopathy, herbs, acupuncture, chiropractic, and many other alternative and traditional remedies. But they can only do so much, and because I am familiar with them, I know their limitations. Detoxing will not cure Rett Syndrome. They’re working on a cure, which I am very hopeful for, but I can promise you that detoxing is not it. It’s quite simple, really. Just listen to special needs parents. Believe me, they know what they’re talking about. They know more about their child’s condition than many (if not most) doctors.
This also brings to mind an instance when a sweet older lady at a friend’s church, after hearing about Anna’s diagnosis, asked, “Well, have you prayed for her?” Again, I am not against prayer. I do it all the time. Multiple times a day. But to ask whether I’ve prayed for my disabled daughter? Ask any believing parent whether they’ve prayed for their typical child. I guarantee they have. Now ask any believing special needs parent whether they’ve prayed for their disabled child. That answer is obviously YES ALL THE TIME.
I have cried out in agony over Anna’s pain, communication barriers, and her prognosis for the future. I have bawled on the bathroom floor begging God to please take this horrible disability away from my precious little girl. And this lady. I’m certain she was well-meaning and wanted to encourage me, instill hope in me. But. This. Lady. has the audacity to ask a believing special needs parent whether I’ve prayed for her. Because clearly the problem here is not that God has allowed my daughter to have a dysfunctional chromosome, but is rather that I simply haven’t prayed for her. Clearly it’s because I’m lacking faith and not because… you know… it’s in her DNA. Literally a part of who she is.
Don’t be this lady.
When you encounter someone whose child has a disability, don’t act like you know better than they do. Even if you are fully convinced that you know better, that you can cure their child, that you have THE answer they’re looking for… Just stop.
Stop and Listen.
I hate that I can think of at least half a dozen more of these scenarios that I’ve encountered. Some with health care professionals. Some with social workers. Some with everyday people. I’m more understanding with everyday people, but honestly if you are a lay person and not a professional, why do you think you know better than the parent of the disabled child? Or better than all the doctors, specialists, and other experts that we communicate with, consult with, and read published information and studies by, all throughout however many years we’ve had the diagnosis? You don’t know. Or maybe you do. But even if you do, we still don’t want to hear it. Because we hear it all the time and frankly we’re just tired of hearing it. So please…
Don’t be those people.
Stop and Listen.