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 
You are awesome.
Please, please, please keep informing us of these types of things. I don’t want to say stupid things. You’ve already helped me be tons more patient at the store towards a screaming child & their parent. Also, what are some things you appreciate that people do or say around an autistic child or their parents? Thanks so much for all the info!
I really appreciate people like you for so many reasons. For one, I do know a couple of kids with autism, including one of my first cousins, but I really don’t know a lot about it, partly because I am afraid to ask and afraid that the parent would be uncomfortable answering. I always ALWAYS appreciate when people like you help educate people like me, so thank you for having the courage to do it on this blog, I hope you will continue to do it. I remember reading a blog of a mother who lost her 14 month old to a drowning accident, and she taught me so much about what it’s like to go through something like that, how you cope with it, and what kinds of things are helpful to say and things that are totally the wrong thing to say. Anyway, I always like to hear it straight from the source. So keep up the good work, and maybe in another post, let us know what kinds of things we should say that will be encouraging- what kinds of things help you continue on day after day? I’m sure a lot of people don’t know what to say, but we want to try to help you get through these challenges, because motherhood is hard enough, but to add the challenges of autism, I honestly don’t know how you do it- it sounds super super hard. I’d love to hear more about that too. Anyway, thanks for sharing. Get up on your soapbox anytime.
Thanks for standing on your soap box and educating me! You are right … just because I know one or two kids with autism means: I know one or two kids with autism, it doesn’t make me an expert.
I also understand your frustration with other people suggesting what you should do to help Kamp. As kind hearted and well meaning as they are, it implies you aren’t doing all you can to help Kamp. Which is not true, after all you are paying to take classes to learn all you can about autism.
Thanks for standing on your soap box!
Loved this. It is like when people refer to little people as midgets (which is very offensive), even though it might be a bit uncomfortable in the moment, I correct them because they need to know. So keep on tellin’ Beth! Love you and your blogs! Now when do we get that dinner with you guys 😉