Sunday, November 3, 2013

All Autism, All of the Time

If you're autistic, or the parent an autistic child, you'll likely understand exactly what I'm about to say. If you're an autism blogger, like me, you'll understand this even more.

My life is all autism, all the time. There is not a single second, minute, or hour of any day that is not dedicated to me thinking about it. I rabidly read about it. I will discuss it with anyone, willing or not. "Once you tell one person, and then they tell one person, and so on, and so on..."

People in my life, without autism or not 
touched by it, 
don't get it. 

Why would they? Most of my closest friends get it- probably because I've hijacked them onto the autism train. I've force fed them the information, they know Morgan and other people who are autistic, or they are willing to listen. I also have a great group of autism parents where we live, many of whom are strong advocates.

If someone calls me in the middle of the day, they are highly likely to hear my keyboard clacking. This is because I'm either writing a post about autism, private messaging a mom or dad about autism, or (rarely, but it's becoming more frequent) giving a quote about how autism has changed my life. I don't feel as if I can tell the caller that I can't talk because I want to talk to them, but I am also not willing to tell the person I'm pm'ing that I'll get back to them. I'm too afraid of what I won't come back to.

Those private messages, more often than not, are a lifeline (I'm told) to a parent in need. Sometimes it's something as simple as a question about an Individualized Education Plan (IEP). There have been multiple instances where I'm talking a parent back off of a ledge or cliff when they've had to consider hospitalizing their child and they feel as if they are now (the parent) suicidal.  No one needs to feel alone and in the dark. This is a service that I provide free of charge and am happy to do so. I also discuss SIBs (Self Injurious Behaviors), aggression, and several other things that these parents aren't comfortable having posted onto my blog's Facebook wall or in any other place due to identifiers.

My life is not understood by many, how could it be? I'm not getting paid for any of this, but I'm thrilled to do it. If I can help as many people as possible, then I'm happy to do it. I've been in these parents' places too many times to count without an outlet. Everyone needs help without judgement. If I cannot help them, I research the right places which could.

There is no escaping autism. 
Autism is your child and your child is your life. 
You never give up on either.

Autism is my child. My life. And while it isn't a bad life, it's an all encompassing life. It is what it is. If you can't handle me talking about it, don't write, call, or visit. Just don't interact with me at all. Don't tell me you want to understand and then chide me for explaining, because then you're going to get a big "Piss off" from me.

For those that say, "Shut it off. Take a break. Enjoy your family." Allow me this:

You think I don't already do that? I do shut off my computer, but I keep my phone on me in order to refer out that parent who might be on that edge of desperation.

Take a break? What the actual hell is that?

Enjoy my family? Every. Damn. Day.

For those that don't get why I'm so tired at times (all the time), here's a small breakdown: here lately, Morgan has had some trouble sleeping. His SIBs, outside of school, due to the environment at home (read: my health issues) are a bit high. We're having some aggression issues at times- at home. Morgan's had a few anxiety attacks at school. I'm also hyper focused on Bay and how he deals with all of this because he's five and I need to split my time equally, which never happens. I worry all the damned time. He's part of the autism family, too. And sometimes, he doesn't deal well with it all. He's high anxiety sometimes, which is hard. However, Bay's in an inclusion class at school and it's helped him learn soothing techniques for his brother. So, he too, is all autism, all of the time. But he doesn't seem to begrudge it any more than I or his father do.

I'm probably, when you ask how things are going, to tell you about those things, or rattle off some incoherent bullshit. Because that's what's going on in my life. And, frankly, I could give a shit about your Pampered Chef party, although it sounds cool. But I'm not tuning you out... I'm waiting for the other fucking shoe to drop.

When you call an autism mom, be prepared for her to be tired and to be half listening. Sometimes we're juggling 1,000 things at once and preparing for the school to call at any minute and for the special alarm ringtone for the school to go off. I know I am.

If you can't handle any of this, then don't bother trying to join in. Autism, especially parenting an autistic child, is a "jumping in head first" method of parenting and I'm one of those parents who not only jumped, but dove. 

I live it, eat it, breathe it, and write it. 

Autism is him. Autism is us. 


  1. Yes. Yes, yes, yes!!! This is why I have started blogging. I need an outlet and a vehicle to share our world with the "outside" world. Thank you for this post.

  2. Thank you for sharing your life experiences, it's been important for me to feel understood - even if by a stranger :)