I keep wishing for people who do not spend every day with my children to tell me that what they do is “normal”.

Let me be very very plain about this, I would love to have “normal” kids, with “normal” meltdowns and “normal” things, but I don’t. I am okay with it, and I’m asking everyone else to be okay with it too. We have things that are totally age appropriate and developmentally appropriate, but what people that live outside of these 4 walls don’t see is all of the work we put in as a family to appear “normal”.

Daily we have to talk about our schedule for at least 30 minutes before we can leave the house, sometimes longer, and I am to the point of reinstating a visual schedule for both boys, maybe that will happen today actually. If I refuse to talk about it for the 7ooth time we melt down, hard.

We get stuck talking about the same thing for days, and sometimes even weeks. When the subject is changed, we melt down. If things are asked in different ways, or told in different ways, we melt down. If one of the kids tells the other what they are saying is wrong, without using a specific phrase, we melt down. It’s a circle that sucks to get stuck on.

We have a very specific way of starting the day, if that is interrupted we melt down. If we are going to be doing something special or out of the ordinary there are days of prep involved in making it a success. If it is to a place we’ve been we talk about when we are going, we look on calendars, we count days, we tell every person we come in contact with. If it is a new place we have a million questions and if left unanswered we have issues.

We stutter, and spin, and flap and hum. We fight sleep and have night terrors. We have seizures and tummy issues and are hungry all of the time. We try new foods and gag hard every time. We do better when we have our kindles and headphones on. We can’t move to a certain task until we have finished reading an entire series of books. We HAVE to brush our teeth after every meal, we have to eat every meal and snack at just about the same time every day.

We lose our words when we are over stimulated, we sleep hard after seizures, we have to be in charge of everything. We try to play with friends and end up alone just about every time because we can’t figure out how to play tag, or why they aren’t into the overly complicated adventure game we’ve concocted.

More than anything we try every day. We try to just go with the flow and it’s hard for us. We try to find our words, we try. And sometimes we have ugly responses, and they aren’t always intentional, and mommy and daddy know when they are and when they aren’t. But we still get the looks and the eye rolls and the stares.

I see where other almost 6 year olds and almost 3 year olds are, and I know where my boys are. I know where we excel and where we lack. But normal, we are not. AND I AM OKAY WITH IT.

So please, stop telling me things that worry me are just normal and they will out grow it.

 

 

 

 

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