Monday, September 30, 2013

A Bad Day?

I've said it before, many times.

"Today was so hard. Why does it always have to be so hard?"

I've taken for granted the bits of joy, and focused only on the bits that aren't so joyous.

I've put K in situations I know are beyond impossible for her, then cursed the gods when things didn't end well.

I've lost patience with B, and pushed him to the point of melting down.

Yet, I'm always surprised. Always left wondering. Always asking why everything has to be so hard? Why must we face so many bad days?

But, I don't want to ask those questions anymore. When I let out a weary sigh, and talk about how bad the day was, I am, in essence, placing the blame squarely on my children's shoulders. I don't take into account my own missteps. My own inability to understand life isn't perfect for anyone, and see the gifts each day has to offer. I'm telling people that because of autism, because of my kids, there are days that are just plain awful. It's not a burden my children should have to bear.

I never want my kids to see frustration or sadness on my face, and think they are the cause. I never want my attitude to convey to the world that autism is some giant, evil, monster, and therefore so are my children. I don't want to give the "hard" times a life of their own, making them the only things people see. Bad days are a given for anyone, so why can't we shift the focus to the good days? Build up ourselves, one another, our kids, with those?

There is being honest, and then there is throwing a pity-party each day. There is doing the same things over and over again, and being shocked the results are always the same. There's never being able to share a story of something fantastic, without qualifying it with something bad happening while getting there.

Because we can never just share joy. We might lose our membership to the club if we did that.

We can rationalize it many ways, but each time you choose to tell the world how bad your day was because of autism, you are tearing your child down. Making them the cause of your pain. Especially if you believe there is no separating autism from your child.

A "bad" day means without your child, it would have been a good day, and that is just so sad to me.

I'm sure many of you think I am oversimplifying things. That life is so much more complex than what I've described, and how dare I accuse anyone of blaming their child when life gets hard! Just remember, what the outside world sees from us is what shapes public opinion. I know there are those who see autism as a fate worse than death, and can see nothing positive about the lives their children lead, but that's not me, and that's certainly not what I want the people around me believing.

Sure, there are days when life doesn't go exactly as planned, I am not denying that. Of course we are allowed to vent. The problem arises when all we do is vent, and feel that we can't share anything good without peppering our stories with little reminders of how it isn't always that way.

My hard days are mine, caused by my own reactions to the world around me. I need to own that, because it's just too easy to blame autism, instead of working on myself. It's been a long journey to this point, but how I see my life is my choice, and I'm tired of being miserable. It's time to start enjoying my children, and sharing that with the world.

What am I teaching them about autism? What am I teaching the world? 


  1. Honey... we all have bad days. Yes sometimes we are to blame.... sometimes autism is to blame. It happens. Blaming yourself isnt going to help. It's only going to make you upset at yourself more and more. Not a good thing hon.

    1. It's not blaming myself for bad days, as much as realizing that sometimes I do stupid things that lead to them. Forcing my kids to do things I *know* are too difficult for them right now. Overreacting when things don't go perfectly. Like, when K had a hard time at dance. I could have thrown my hands in the air and cried over autism "ruining" something. I could have written a blog post on how hard things can be. But, we didn't look at it like a "fail". We just moved on with our day. If I had forced her to stay, or let it ruin the whole day, then it would have been *my* own fault for allowing one tiny thing to grow into a giant issue. KWIM? Or, I know Katie hates loud, crowded, places, so if I continue to take her places like that, is it autism's fault, Katie's fault, or my own fault for not "listening" to my kid? I'm actually a ton less miserable these days because I don't force anything, or set the kids up to fail, and focus on the good. Like, K having a great time at the zoo with my husband, and not the fact she didn't make it through dance. It's only my fault if I keep forcing the same things over and over, hoping for a different result...don't they call that insanity? HA. Or sitting around and complaining about life, instead of enjoying it. THEN my misery is MY fault!

  2. Every family has bad days. I think its a good step to remove the blame from your kids, and call a bad day what it is... a bad day. No one needs to receive the blame. I agree that your perception, and reactions are what cause it to go from a meltdown, or autism moment, to a bad day. Own it. You're doing the best you can, and I think its an inspiration to hear someone own that, and know that they have a choice in this.

    1. I am just tired of, "I took K to such and such, and she had a giant meltdown, and I hate autism!" It's like, really? When will you learn? Your kid had a meltdown because you put her in a situation that, you knew going in, was tough. Then you are surprised when it all goes down the tubes, and the first thing you feel the need to talk about is how crappy a day it was? I just can't do that anymore. I think recent, horrific, events within the autism community have really pushed me to rethink how I see everything. What I am telling my kids, those around us, about autism, and our lives. I don't think it's being inauthentic if I focus on the's just choosing to make that the focus, instead of the times that aren't so good, and that lets people know I love my kids, and my life, and am not some miserable sack, wishing for something different.

    2. I also think people have the right to vent, but sometimes it gets to be too much when that's all they do, or when they can't talk about something good without peppering the story with the couple "bad" things that happened. It's like we can never just let go and enjoy our kids, because that means we wish autism on everyone, or something ridiculous like that.

  3. Absolutely every family has bad days, some families, due to their particular brand of autism have mostly bad days and I think if you are looking through those glasses it is hard not to see the world as a very negative, tough place. I agree that we have to look to ourselves before we look at our kids and it is oh so important to also truly embrace and celebrate what our kids get right and make sure that they get the message that they are fabulous human beings just the way they are. Another blogger friend recently wrote that she hates "fruity autism blogs" --her choice, but writing a fruity autism blog helps keep me grounded and gives me a certain amount of perspective to be able to see the good, even through a bad day.

    1. I used to hate "fruity autism blogs", too, although I never saw YOUR blog as one...ha...but now I am embracing them. I mean, I've been there, when things get REALLY tough, and it's like you can't even breathe, but I also allowed myself to sink down low. I allowed myself to see my child as someone "taken" by autism. I forgot to see HER, and all her goodness. I just don't want to be that negative person, anymore. I also don't see the need to complain over every.little.thing. Like, oh, really, your kid had a meltdown at x,y,z bc it was loud and overstimulating? SHOCKER. Going on and on about it like it's the worst thing to ever happen? That annoys me. Some people don't get the part they play in these "hard days." And they don't get that hardcore venting over something like that, is sending a really negative message to the world (and we wonder why there are those who have deep sympathy for parents who murder their kids.)

  4. sorry, that's anything but a very negative, tough place. Oops.

  5. You are absolutely right Jen...thank you so much for sharing