Too Much Autism "Stuff" (and a couple pictures of funny elephants)

I had my Facebook page open on the computer recently and my husband needed to use it. Rather than switch out users and wait forever for his own settings to come up, he just used the browser that was already open. And since FB was the last thing I was doing on the computer, it was forefront on the screen. We have many mutual friends, and being that we’re married, it’s no big deal to scroll through each others’ news feed if the opportunity presents itself.

As he was scrolling through, he began to notice a certain theme. He commented, “Wow. You have a lot of autism ‘stuff’ on here.” He was noticing the various pages that I like and follow that are centered around autism. Some are small groups I’m a part of made up of only parents of autistic kids, some are faith/autism centered, and some are pages just like mine that are personal pages about families living with autism. His last comment hit me in a funny way. He said, “You just can’t get away from it, can you? You can’t do something without autism being involved?”

My response? No. Not really.

My Facebook news feed probably looks a lot like anyone else’s. I bet that whatever is most important to a person is most talked about and represented on their FB news feed. Mine does include lots of autism posts and memes. Wanna know why? Because autism is kind of a major deal in my life. My son is autistic. That is not something I can ever get away from.

My husband and I have been on at least one long getaway together, several over-nighters and many dates alone while parents and friends have blessed us with babysitting. While my mind might be taken off of the kids for a while watching a movie, or spending time with my sweetheart wherever we are, autism is still there. It takes more of a backseat in those scenarios, but it’s still there. I wonder how Sam is doing when I’m not there. Autism moves to the forefront when I get a phone call asking how to handle a meltdown when they’re in Target and he wants a toy that was over the budget I had set for him. . . and forgot to tell him about. (The answer, by the way, is to just give him the toy. It makes everything so much smoother for everyone involved, so long as he shows appropriate behavior and calms down before being obliged.)

The point is, I am usually thinking of autism for a good portion of my day. Every day. 

Every. 

Stinkin’. 

Day.

 I have this blog so I can get those thoughts out of my head, though I don’t use it nearly as much as I actually think about autism. I’m writing a book, so various themes and ideas run through my mind and out into one of the many journals I keep for brilliant idea-writing. As I scroll through my news feed, I read the struggles of other parents – mostly moms like me. I try to comment and encourage them. Sometimes I’m the one posting in the group about a grievance or achievement. Of the fifty+ articles people post about vaccines or the latest news story, or how things are going in their life with autism, I typically read a few. The articles jump start my thinking on that particular topic, or reminds me of something else about autism. That leads me to talking things out in my blog, or in a few sentences on FB to get a conversation going, which goes flat the vast majority of the time.

Not to mention, I have an actual child with autism living with me. I anticipate his return home from school. I wonder what kind of day he had and what kind of evening we are going to have. He has therapy three days a week for two hours each day. Guess what’s on my mind during that time? Every Sunday, I’m wondering how to make the worship service as smooth as possible for him. Make sure he has his blank papers. Make sure the iPad is charged. Make sure the volume is muted. What to do when he suddenly cries out, “BEDO, BEDO, BEDO” (like the Minions from Despicable Me) or argues too loudly during the sermon. For every event or outing, how autism will affect him in those situations is one of the first considerations I make.

Despite all of this, I (sometimes) don’t mind all that much. Don’t get me wrong here. It doesn’t mean I like it. I still have my moments when I have just had ENOUGH of autism. Then I call one of my good autism mom friends from Florida or California, and we both talk about how we’ve had enough of autism. Even in doing so, we’re still talking about autism. Because it’s part and parcel to our life and it will not just disappear. All we can do is try to cope the best way we can. We try to talk about other things – new babies, writing books, tea, and how they both live in warmer climates than I do. But we can only ignore the elephant in the room for so long. Seriously. We can’t chat long before one of us whips out ABA for our son in the middle of the conversation. We don’t even say, “hold on.” There’s no time. We just start talking to our kid while the other person realizes they are no longer being listened to and waits patiently. Because we get it. And then we laugh, and we sigh. . . or cry. . .

 

However, I am happy to say that it doesn’t bother me nearly as much as it did a year ago. Before coming to what I think was true acceptance of my son having autism, I grieved over every one of these thoughts. Sometimes I was in autopilot mode, and did what I needed to do or made the necessary decisions in the moment without falling apart. But for all the internal thoughts, for every post I read or wrote about autism, for every sudden deja vu realization that this autism thing was really real, I grieved. It came in various ways, which would require a whole different post, but it came.

There are probably definitely parents out there who might read this and be angry at me or maybe just angry in general. Angry that I’m “okay” with something that isn’t “okay,” even though they understand the continuous onslaught of autism questions and musings. Frustrated that they are not there yet. Not that I have reached some pinnacle of acceptance that negates any grief of future challenges. I’m not trying to brag that I don’t struggle like everyone else. I do. It’s just that things are different now. My struggles are the same, but the way I handle them takes on a different form. Usually. I’ve just come to accept that this is part of my life, so it doesn’t always bother me to see so much autism “stuff” in my e-mail and Facebook news feed.

I think that this is one area of my life that is proof positive of the hope that I have always clung to that is real and true: Jesus is King and is making all things new – now. I can’t wait for the day when autism is no longer a struggle because all struggles will be ultimately and finally conquered forever. But for now, He has given me grace more than sufficient for my need to be okay in a not-okay world.

If you’re not okay right now, bogged down in the autism world, that’s okay. We don’t have to be “okay” all the time. I just want you to know that Jesus is your “hope in autism” with immeasurable grace for your every need. Please feel free to contact me at sarah@spacelots.com if you need someone to talk with. Sometimes you just need another person who can honestly say, “I understand.”