Saturday, July 11, 2015

People Don't Get It

I know people who have small dogs. I have a big dog. And yes, it makes life a little more complicated when you want to go somewhere. Especially if it's a little dog, from what I understand. Maybe either way if you live in town (which we don't, thank God).

The problem is that you can't leave them with anyone else, you have to either take them with, or get some kind of doggy day care or something. One costs a lot and your dog might come home sick, and the other makes your life complicated, again, because you gotta drag a dog around and keep it from dying in your hot car or something.

Now, I don't want anyone to take this the wrong way. Please just relax, I'm only using it as an example.

But having an autistic kid is kinda like having a small dog (or a big dog in town). You can't leave them home alone, you can't find someone who will watch them for you, or you don't feel confident it will go well if you do, so you have to take them with you wherever you go. Which makes life complicated.


But isn't there some truth to it? People who have kids with autism probably know what I'm saying. It is really hard to get self care on a daily or weekly basis, but even once in a while when you want to get away together as husband and wife, life gets complicated.

You want to be sure that whoever watches them can watch them in a familiar environment. New environments make them very anxious. Even environments that are familiar have different smells, sounds, foods, cooking tastes, routines, rules, etc. Again, anxiety. Sensory overload. Meltdown.

It is usually preferred to find someone who would watch them at YOUR HOME, where the autistic person is most comfortable and at ease, where they have their own toys and their own bed and their own smells and foods. However, like with watching your dog, no one wants to make things easy for you and actually do that. They don't want to be inconvenienced to be out of their homes, and I guess I can't blame them because I don't want to watch someone else's dog, or kid, in their house either.

Worse, if they refuse to do it because you won't let the child stay at their house. As if it's some kind of justified punishment for you if they use that kind of mental/emotional blackmail to get their way or something.

I'm not really speaking out of any specific person or situation. Just things that I perhaps mostly assume about what people would say or do if we were to ask them. Sure, some of it is pretty realistic, but I'm not as upset about it as it may sound. Life happens, and autistic kids need to sometimes just go with the flow even if the flow sucks for them.

We aren't even the kind of family who go away a lot. I didn't have kids so that I could constantly be hopping around town, state, country, world and leave my kids behind. If I go out of state, my kids come with me because why would I deprive them of the excitement and fun of seeing someplace new? And we have been out of state several times (though not yet with Bonnie, to be truthful). 

But once in a while it's still nice to go away. And this year is one of those years.

We are never sure what to do when we make plans, because B has so much anxiety. We wait until the day before, and he has a meltdown because it's too close and unexpected and doesn't fit into his plans for how he pictured that day or something. We tell him a week in advance and he still melts down all week, and loses his mind about it because he's still so stressed. 

Ultimately, I wish he could just stay with someone here at the house. This is his safe place (how many parents can say that about their kids?) and he is comfortable here. He has his safe places, his happy places, all his toys, it's comfortable here. He has various complaints like smell, or the way food is cooked, about anywhere else. Then there are options we would never choose for other reasons than his sensitivities - I don't go into details on that. 

So you end up worrying about your kid, you know? Will he get any sleep? Will he have a meltdown? Will he use his no service, disconnected phone to call 911 to tell them that his parents went on vacation without him? (Yes. Seriously. Donate your phones, this feature is what helps domestic violence victims get help. They don't even have to have service to have 911 capability.)

And will they understand him there, or will they just think he's being a jerk?

See, that is probably the biggest issue leaving your kid with anyone, family included. Will they just consider him to be a jerk, or brat, or someone who just can't stand being inconvenienced or something? Everyone who knows us knows that he has autism, neither he or us have been shy about sharing that. He is matter of fact about it, so it doesn't bother him.

But really, unless you have a kid with autism, you do not understand what it's like. You do not understand the little mental whys and hows. You don't understand the little characteristics that make him struggle. Yes, smells, sounds and tastes that are different from what he is used to will make him gag. Yes, he won't sleep well. Yes, he is going to go into periods of overactivity out of sensory overload or high anxiety. Yes, when he plays he controls things because he feels so scared of what will happen if he doesn't - the unpredictable way that kids play puts him on edge and makes him nuts.

No, I don't expect you to let my kid bully yours, or whatever. That's not what I'm getting at. I just want you to understand WHY he's doing it. Then you can, if you choose, help direct him out of that anxiety, give your kid the tools to understand that he's not trying to be mean, and it really teaches everybody something. It teaches my kid to loosen up, and it teaches your kid to work with people who are difficult. And it helps you too, because I can guarantee you are going to come across autistic adults who are undiagnosed. I don't believe in this "increase in prevalence", but "increase in diagnosis" due to increased knowledge. And since with adults we just figure some people are "jerks", and they aren't causing trouble in class, adults don't get diagnosed as adults unless they willingly go looking for it.

Anyway. Just venting. Thought about the comparison today and thought it might make a good post. Do YOU have any experience, or tips for getting away without your autistic kid? Any funny stories, horror stories, anything? 

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