Sunday, October 9, 2011

Lemons or Lemonade

Warning:  Ranting.  

Like lots of parents with kids on the autistic spectrum I read a lot of other blogs by parents with kids on the spectrum.  They vary about as much as autistic kids.  "When you know one child on the autistic spectrum you know one kid on the autistic spectrum." The same is true with spectrum related blogs.  They come in all sizes shapes colors and temperaments.  I do have my favorites but in all of them, whether the children that inspire them are in better situations or worse situations I feel an affinity toward them.  I often recognize my daughter in other parents' blog posts, or recognize the frustration, worry and desperation which invariably comes with having kids on the spectrum.

Not all autism related blogs are my cup of tea though (particularly since I am exclusively a coffee drinker).  There are some that I read once and never visit again.  This sometimes happens when the blogger believes something that I don't which is hard for me to get past, for instance those who believe in the autism-vaccine link.  Or those who are fully engaged in Casein-free-whatevers or those who discuss meds exclusively.  People have a right to believe and blog about what they want and I am the first to admit that I am not into these (and other autism-related topics) because my daughter's situation doesn't seem to require it.  Maya has responded well to therapy and doesn't seem to need medical or dietary interventions to help stimulate their development.  If her situation were something else, I might very well be a parent engaged by these topics.  

One thing (of many) I have learned over the past 3 years since Maya has been diagnosed is that we parents of autistic kids are all just doing the best we can to deal with our individual situations. 

Which is why I really despise it when I see judgment from within that community toward other parents.  It's hard enough out there to deal with judgment from the outside world.  Nothing worse than all eyes upon you at the mall when your kid is in full-meltdown-mode and you are getting looks or out-and-out like "isn't that child too old to act that way" or those who (with the best intentions) don't really believe your kid isn't autistic because she is not counting cards or doing a full on Rain Main.  

I blog about my experience with autism because I love writing and because writing about my situation helps me both to process it and find release from it.  It helps me to put things into perspective, it helps me to keep my wits about me, to keep my sense of humor, to relax, to do lots of things which are good for my daughter.  Blogging is largely responsible for my ability to sleep at night and not spend my days as a stressed out, teary or angry version of myself. 

And yes, my blog largely focuses on the development of my daughter and finding a good spin for things.  I am certainly not a flowery, everything-is-coming-up-roses-kind-of-girl.  People who know me IRL can contest I am one of the most cynical, sarcastic beyotches out there, with a vocabulary that can make a sailor blush.  I don't make lemonade because I like the taste of lemon juice, straight.  I don't even pucker.

But when it comes to my daughter and her autism I do try to focus on what is good, because if I didn't, I do think the struggles, the difficulties, the not-knowing would beat me down to a pulp.  And how is me being beaten to a pulp going to help my daughter?  Probably not at all.  

Lately I have been reading quite a few blog posts which point fingers at bloggers who focus on the positive or who put a sunny spin onto their situations and that it is somehow more genuine to not do this.  Or that my situation must not be all that bad if I can somehow find a way to make the sun come up in my own world while dealing with a child on the autistic spectrum.  

So on this blog, I guess I do make lemonade.  That doesn't make my situation any less genuine than anyone else's, it's how I choose to deal with it.  It's the way that helps me the most in seeing things and the way I can best help my daughter.  I totally get that there are people out there dealing with situations much worse than mine and they (or any other blogger) has every right to put any kind of spin they want on their blog.  It's their journey, their story and I have no right to tell anyone else how they should experience their situation.  If you don't like how I experience mine, that's okay.  

I know I should take the high road here and not concern myself about what others think and I don't worry, but it just pisses me off that even in the world of autism we are not free from the judgment and criticism from other autistic parents.  

Come on people, it's hard enough out there.  


  1. This is a hard one for me. I don't think I necessarily judge others, but I *do* get jealous of those who seem to live a charmed life with Autism. I've never thought that from your blog, and think you have been pretty honest about your journey, but there are blogs I can't relate to at all, because even when things seem to be bad, the author never seems to be fully honest. Not saying everyone needs to lay out every detail, but I think some blogs are written to garner huge followings, and some are more authentic, without so many followers, but with a truer story. It probably comes out a being judgmental, but for me it's about wanting so desperately for one other person to truly admit to the terrible times so I don't feel like I have failed as an Autism mom. What I don't read enough of are blogs where people talk about the real nitty gritty, and I am often left feeling very isolated and alone in our Autism journey. I doubt we are the only family that struggles as we do, but it makes me sad that I find so few that seem to be in the same boat. I think there is a difference between being positive, and making it seem as though everything is always great. It might make a me a bad person, and I know I could be a way better person most of the time, but sometimes it sucks to see the blogs where everything is coming up roses. I try to have variety in my blog, the good, the bad, the funny, but I do share when things are at a point where I don't know what to do, and it can be lonely when no one else seems to ever feel that way. I appreciate more than I can put into words when someone is brave enough to share their crappiest day, in no uncertain terms. This probably all made very little sense and is one big ramble-fest, but I don't think there is much of an autism community outside a select few...the rest of us are just looking for anyone to understand on our darkest days...that's hard to come by.

  2. Hi Jen,

    I know how you feel and I think it is a natural. I am not sure that anyone out there dealing with autism on a daily basis has it easy. But yes, there are degrees to things. I think you are very brave about how you can put your deepest fears, crappiest days out there for the whole world to see. And I see there are blogs out there written just to get a (big) following and to get loads of comments. But let them is what I say --whatever gets them through the day. I always have the right to not read it. If a blog doesn't speak to me in some way, I don't read it anymore no matter how big the following is. I am a big believer that what you are in life you are online as well.

    I don't know how much of a community is out there either, but I do know that I have found comfort in other people's words and experiences even if they are vastly different than mine, so to me I think that is a community. Maybe not the same kind that will come over with a casserole or take me out to a spa day when I am blue but still.