Ok I have been out of the blogging game for a bit – but I’m back baby!
I have been trying for a while to figure out exactly what I wanted to write about, and after some recent events I have decided to climb up on my soap box for a minute. So here I go:
1) When you meet someone who has autism , PLEASE don’t immediately ask, “What’s your child’s special ability?” The truth is that not all children with autism are savants. And when you ask a mother (or father) that question, and at that moment their child’s special ability is head butting you with precision, it can make parents feel pretty uncomfortable.
2) Knowing one or two kids with autism means you know one or two kids with autism. It in no way makes you an expert. Kids with autism share a lot of the same symptoms, but autism is a HUGE spectrum. While some kids eventually talk, some don’t. Some grow out of being aggressive, and some don’t. When you say things like, “I know a couple kids with autism and they grew out of it. Yours will too.” you’re being insensitive, and I’m sorry but a little ignorant.
3) Just so everyone knows where Jesse and I stand, we know who Jenny McCarthy is and we don’t agree with what she says, and I personally have some issues with her. I respect any parent who has a child with autism and decides to do the cleansing of metals and hyper-baric chambers because I know they are doing what works best for their loved one. Jesse and I have decided that those procedures aren’t right for Kamp. We have heard and read all about the gluten – kasin free diets and have seen miracles take place in some kids, but for others (including Kamp) it has not. Meaning, there is no set plan to treat autism. Some things work for some kids and some don’t. That’s the frustrating thing for parents of children with autism, we have to wade through everything and figure out what works best for our kids.
I guess I have decided (after way too many awkward situations this last week) that I need to be a little more direct with people. I keep worrying so much about hurting other people’s feelings that I have allowed other people to say hurtful things to me. I hope this is educational, and who knows, maybe it’s going one too many days without sleep. Or the constant screaming. Or getting hit over and over again. Maybe it’s all those things talking. Yeah, I’m gonna go with that.
Phew, I did it. I can get off that horribly uncomfortable soap box. And as much as I would rather have avoided this conversation, it’s all part of my journey with Kamp. Jesse and I are his advocates.If we don’t stick up for him who will?
Kamping with Autism 